Bending To The Will Of Chronic Illness ~ 4 of my new norms

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

  1. 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.
  2. 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.
  3. 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.
  4. 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.

Maya Angelou

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.




16 thoughts on “Bending To The Will Of Chronic Illness ~ 4 of my new norms

  1. I write everything down as well! I have sticky notes everywhere!! On my mirror, on my walls, everywhere in my purse, on my phone. I also keep paper everywhere in case I need to write something down quick before it escapes. If I don’t write it down, I will forget it two minutes later.

    Liked by 2 people

  2. I can completely relate to your post, Mishka. I have prompts, reminders, alarms etc everywhere. And agreed, ‘No’ is the new yes, as a past people pleaser. Your blog title is perfect, we continually bend to ‘new norms’. Chuckling with you at the absurdity of CI life. Thanks for bringing a smile into today.🌸

    Liked by 1 person

  3. I so relate! I love making To Do lists and checking off things, one by one. When I got to the point where the long list of To Dos overwhelmed me, I found this notepad that had cute To Do list templates with room for only one or two things. It was wonderful to see visually that I could give myself a break and not freak out over no longer being able to do twenty things in one day. I gave myself one thing to do and then two things to do and suddenly the world seemed more manageable and I felt better. Now that I think about it, you’ve given me a great idea for a blog post about my little to do lists. Thank you so much! I am so glad I found you.

    Liked by 1 person

  4. Emma (Not Just Tired)

    I can really relate to this. I also have to write everything down these days! I used to think it was just me who had become so forgetful, until I read about other ME/CFS sufferers dealing with exactly the same thing. My phone is full of reminders and notes, as well as our kitchen calendar! I was also a big people pleaser and learning to say no has been one of my biggest lessons. I used to tear myself up feeling guilty when I had to let people down, but I am getting much better at putting my health first these days! Such a relief to let go of all that wasted emotional energy! Great post and beautiful paintings 😊

    Liked by 1 person

  5. I love this post. Adapting to the ‘new life’ was so hard at first but there can be good things about it as well. For instance, I always listen to music in the shower now too and I love it 😛 its a good distraction! Feeling okay to say no, I still sometimes struggle with but it is such an important one to learn ❤ Thank you for sharing this xx

    Liked by 1 person

    1. Thank you for reading along and sharing your experiences.🌸 I’m sitting here smiling because it’s neat to know there’s someone else who enjoys shower music.😁 It’s been such a gift! It’s crazy how unpleasant showering has become and how fun the music makes it. It’s the little things. 😊 Hoping today treats you kindly.🌼


  6. I love your comment about having to play invigorating music to get your in the mindset of taking a shower. I giggled myself and will definitely have to play the “Eye of the Tiger” to pump myself up for a shower. I have been struggling to just drive 8 mins to the dry cleaners and finally forced myself to do it 😂. I completely understand and a trip to a beach is well worth the flare!

    Liked by 1 person

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