We were supposed to have an adventure today. I had it all planned – the directions, the hike, even the post-trip burger indulgence.
Lupus had a different plan for today. One that included a 24 hour headache, extreme fatigue, and a nearly non-functional body. So I’m sitting at home – probably giving myself a first degree burn with my heating pad – instead of going for a hike. And I’m thinking about the sudden, inevitable, disappointing side of chronic illness.
I never completely forget that I’m chronically ill, but on my good days I can forget about the lowest valleys I’ve experienced since becoming sick. It’s never long between those valleys, however – just long enough to breathe a sigh of relief and look toward the future with a bit more hope than usual.
Earlier this week I was fortunate to take a day trip to Clemson, SC to see my brother. I managed to accomplish it alone without putting myself into a flare. It made me feel like the next low valley – the next disappointment – was far off on the horizon. Like I didn’t have to worry about it for a while.
I rested for two days after my trip and was very careful to limit my physical activity. I certainly thought I was in the clear to go hiking this morning. You see, Saturday is my best chance for a good day each week, so I get really excited for it. I have Mr. Meena around to drive and take care of the hard stuff; I don’t have to be totally self-reliant. He makes it possible to go further and generally have more fun.
But despite my husband being utterly awesome, there’s not much he can do when my chronic illness makes our world come to a screeching halt. And I’m left feeling disappointed at what could have been, what should have been, what kind of day a healthier person would’ve had.
Disappointment is a huge part of my life with chronic illness.
Disappointment is what I feel when I have to say no so often that I hesitate to ever say yes.
It’s why I always book a hotel with a last minute cancellation policy.
It’s the reason I’m bitter when, yet again, I can’t do something by myself.
Disappointment is realizing that “carefree” is no longer part of my personal dictionary.
It’s my reaction when I run out of coping methods (because I’ve used them all already).
But disappointment is part of everyone’s life, and it’s not something that we can control. Today I did everything within my power to recover – I rested, took pain meds, had a bath – and I finally got to the point where I felt well enough to redeem some of this Saturday with an evening stroll. But, while I was busy getting better, Mr. Meena became terribly sick. There’s absolutely nothing I can do about it. Except wait.
Fortunately (or unfortunately), constantly facing disappointment has given me a lot of patience. We may be staying home today, but there’s always tomorrow.
How do you deal with frequent disappointment?
The Chronic Disappointment of Chronic Illness. Share on X
Thanks for sharing your experiences with disappointment living with chronic illness! I also become frustrated when things do not go according to plan because of my health. Like you said, it has given me patience and has taught me to let go of things I cannot control. Thanks for posting – I am glad I found your blog 🙂
Be well,
Mary
You’re very welcome Mary. I’m glad to hear that you’ve been given patience too – we really need it when things don’t go like we want them to. Thanks for stopping by.
Hi Ava,
I actually noticed you didn't post anything in the CIB weekly FB shares last week, and wondered if you were alright (or maybe off for a holiday!). Sad to hear you were in a flare 🙁 Just wanted to let you know you were in my thoughts (even if I only know you online!), and hope you get back up to a decent speed soon. Take care!
Sheryl, thanks for thinking of me. Actually, even though I wasn’t feeling great, the real reason I didn’t post in the CIB share was because I didn’t have anything new to share. I don’t write a health related post every week, typically, and I didn’t really feel like my post about Sweden was very relevant to the CIB. But I feel very loved to know that you were concerned! I am heading off on a holiday this week, though- hope I can stay feeling well throughout it. Thank you!
Good to hear that you're heading off for a holiday, I hope you get to enjoy yourself! And no worries, I think after a while, everyone in the CIB community is in my mind at some point of time as they are somewhat like an online family. Take care, hope you feel better soon, and have fun!
It definitely feels like a family to me, too. Thanks! 🙂
I can identify with this so much! Thinking of you and wishing you better days ahead.
Thank you 🙂
I can absolutely relate to this post, as I'm sure most people with chronic illness can. It's always nice to read something so relate-able, especially since being sick makes feel like a rare species in my corner of the world. It's inevitable to be frustrated by the limitations, even as I try to take it one day at a time and enjoy the small moments. I hope your flare ends soon and you are able to go for your hike next weekend 🙂
Thank you, Katarina. I’m glad we can understand each others challenges. I did actually go hiking the next day, but I only felt up to doing half of it.
I totally understand this feeling. There are so many times when I have big plans but my body has other ideas.
You nailed this Ava. I hate the disappointment that comes with chronic illness, especially when you are really excited. I have tried to be more realistic about my goals but it is still hard. I hope you are doing better. I enjoy reading your blog… and once again, hats off to Mr. Meena 🙂 Kelly
Thank you, Kelly. I am feeling better and I haven’t had any major disappointments this week. 🙂 It is hard to change our goals when our mental strength doesn’t agree with our physical strength. Thanks for stopping by. 🙂