A few weeks back, Britt aka the Hurt Blogger had an idea based off a conversation – to live tweet 48 hours of her #chroniclife.
Before I get into anything, I want to share a few links – you can check out Britt’s tweets here and tweets from other peeps like myself here. You can also read Britt’s wrap up here and check out others she’s linked to. You can check out the ongoing tweeting here.
Live tweeting my illness related issues was very telling. For me it opened up things I was repressing. It’s one thing to have your rheumatologist tell you that you’re banned from yoga and have to step back to water therapy, but it’s another thing to stop being in denial and realize how very right she is.
I think we spend so much of our time censoring ourselves because what we want to say isn’t popular or polite. Or, as many found during this exercise, we feel whiny when we share about our pain. We think it makes us complainers and nobody likes complainers!
One of the reasons I love my fitbit is that it shows me when pain interrupted my sleep #ChronicLife pic.twitter.com/N87D5NR1Vg
— Kirsten Schultz (@Kirstie_Schultz) February 2, 2015
Personally I learned a lot about myself. I learned that I ignore a LOT of pain in my day to day life. Obviously that’s exacerbated with my hip issues right now, but still. I was more aware of the pain because I was more focused on it. It was honestly a mindfulness exercise for me. It gave me an opportunity to check in with my body in a way I hadn’t done in a LONG time.
Dat #stillsdisease rash though #ChronicLife – at least it doesn’t itch at the moment! pic.twitter.com/gFzMQoTxA9
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
I shared a lot about my morning routine when I’m feeling okay-ish or when I don’t have a choice.
How am I gonna tame this with angry hands?!? #ChronicLife pic.twitter.com/T7TUnl8uQ6
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
Now I have to figure out what to wear, taking into account pain levels, weather (esp humidity & cold), and today’s activities #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
With a real feel of 9 and snow on the way, I’ll need to dress warm but not too constrictive on my joints #ChronicLife pic.twitter.com/fLW3Ei7aFx
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
Now on to makeup, because I have a PCORI meeting to start off my day and don’t want to show off rashes #ChronicLife pic.twitter.com/dvGVHZzEhD
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
First to smooth out my psoriasis on my face and to reduce redness #ChronicLife pic.twitter.com/wEgobAbZom
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
Now since all that erases color in my face, I have to replace some and actually wear blush! #ChronicLife
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
And now I look normal! Well kinda… Haha #ChronicLife pic.twitter.com/43uW9XvNwN
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
I didn’t realize just how much energy I spend on trying to look normal. Most days it honestly doesn’t matter, but that one it did. I had a meeting to discuss applying to serve on a PCORI panel which was well timed with this experiment.
Writing this way, using a stream of consciousness, allowed me to share a lot of things I don’t normally share, like pictures of my bra… which got furiously retweeted despite the lack of boobs in said bra.
The only bra that’s going to work with my shoulder pain is more for show than support #ChronicLife pic.twitter.com/AbvPr4NhfG
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
As someone who deals with moderate depression and general anxiety disorder as well, I was able to share a lot more on those issues than I have in the past. I hope to continue to shed light on how my chronic illnesses and upbringing affect my mind.
It’s interesting just how many people can be judgmental about mental illness, even those who also suffer with it.
I also got to share what keeps me moving when I’m feeling crummy.
Aaannddd coming home to happy “omg mom is home!?!!?!” squeaks from this lot #ChronicLife pic.twitter.com/hZDmCRXg7e
— Kirsten Schultz (@Kirstie_Schultz) February 3, 2015
Only time I kneel down for a long time – playing with my buddies! This us Gus Gus, my lil bff #ChronicLife pic.twitter.com/vfimdgLvDc
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015
The piggies are having problems #cagecleaningnight #quietestwithme #ChronicLife pic.twitter.com/WwUCKmOTNW
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015
I hit all my goals today! And even ended up 700 calories under… Give or take. #chroniclife pic.twitter.com/6UPztK2YUV
— Kirsten Schultz (@Kirstie_Schultz) February 4, 2015
And thanks to my Fitbit display, everyone knows what I weigh. I oddly don’t care anymore haha.
This exercise brought up a lot more feels than I thought it would honestly. It both brought me together with others living with chronic illness, but also made me realize just how much of an individual I am. That’s not necessarily a bad thing, but interesting.
My new job has changed some of the things I’ll write about in the future, just like this experiment has. I hope to bring more research oriented information in addition to talking more about my depression, anxiety, and fears.
I want to start taking one day a week to tweet out information related to #chroniclife. Everyone hates Mondays, so maybe I’ll start there.
I would encourage you to join the #chroniclife movement and see how much you’ll learn about yourself.