A day or two ago I found myself chuckling, which is not entirely uncommon, I’ve always been one to find humor in the little things. The first time I ever got in trouble in grade school was for having the unstoppable giggles during quiet time. The boy next to me wouldn’t stop singing Jeremiah was a Bullfrog and for some reason I found this hilarious. Annnyway, the other day I was chuckling at the thought of a newish routine in my life. As a chronic illness ‘recipient’ I’ve had to alter many things to make my life as functional as possible, and after a while these routines start to feel pretty normal, but truthfully they aren’t, really. Every once in a while I think it’s important to stop and give yourself a little pat on the back for everything you’ve done for yourself to make your life as functional as possible.
Four Life Adjustments
- To quench your thirst of curiosity in wondering what I was chuckling about above😉…it was at the thought of listening to music in the shower. You may be thinking, so, a lot of people listen to music in the shower. Yes, they probably do. Here’s what may differ. Have you ever played a certain song to get you motivated or do you maybe even have a playlist for exercising? If so, you know what I’m talking about, the kind of music that just invigorates your soul. That’s the type of music I’m referring to. The other day when I found myself giggling, I was thinking you know you have chronic fatigue syndrome when you need to listen to music to get yourself pumped up enough to get through a shower. Oddly, the music seems to work, it’s mentally invigorating. Of course, I crash on the other side of it all, but hey to be able to get through a shower is a big accomplishment these days.
- This second new norm for me stems from an old norm. Everything, and I do mean everything is written down. If it’s not written down, it’s most likely not available for my recall. There are notes, on my notes, on my notes. They are in my phone, on scraps of paper, on envelopes, on notepads, I’m sure you get the gist. Everything is calendared on my phone and on the wall calendar. It’s normal for me now but it took some getting used to, or acceptance that my brain is sick and needs aids to help it along. I was never an auditory learner, always visual, but now my memory has gone from not being a good auditory learner to literally not remembering most in-person conversations, including phone calls, and doctor’s appointments. The most important take away from this is that I no longer feel angry at myself for being forgetful. My body is fighting to heal and it doesn’t need me to give it a hard time on top of all that. It’s been a big adjustment, but I was a pretty good list keeper previously so thankfully the transition, in that regard, hasn’t been too difficult.
- One of the best adjustments I’ve made is that it now feels okay to say no. No, I can’t go. No, I don’t want to do that. No, I’m not willing to do that. I no longer feel like I owe explanations. I no longer waste energy providing in-depth reasons of why I’m saying no. And I have to admit this one is very freeing. It’s a work in progress, as I was a grade A people pleaser, so baby steps. If only I’d learned this one earlier I might have never gotten this ill.
- This list could be never ending but you’d get bored, I’d become increasingly exhausted, and that’s just no way to end things so here’s the last one. It’s one I struggle with constantly, daily. It’s weighing out when to push the envelope. Let me give you an analogy. Have you ever seen a body builder lifting a large amount of weight, that grit and determination written all over their face? Well there are times now when I have to reach in that deeply to do things like take a ride down to the seaside to watch the ocean from the car. You may be thinking is she seriously comparing a body builder deadlifting to a ride in the car to watch the sunset? Yes, yes I seriously am because for me, that’s my new normal. Will that ride cost me on the other side when I have to dig that deeply to go in the first place, yes, but will the memory give me something to hold on to while I ride out the flare, also yes. I know the chronic illness sufferers amongst us get this, but those of you fortunate enough to not be walking down this path, please know we are giving our all, and then some…and somedays, and then some more. This is very much so to our deficit on the other side. There are days when we do things we know are going to have steep repercussions, but our souls need nurturing too, we need to see things outside of our homes. I know pacing is vitally important with this illness and pushing yourself all the time is a horrible idea, but there are moments, every once in a while, where our inner ‘body builders’ reach for that deadlift because, not today CFS, not today.
You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.
Thank you for reading along as I share bits about my CFS journey. I appreciate your time. I really do. Time is precious and you could be doing anything with it but you’ve chosen to pop over and spend a few moments here and for that I thank you.
Here are a few more watercolors from following along with World Watercolor Group on Instagram. When I’m better I hope to go to a watercolor weekend retreat. To me that sounds simply dreamy.