Britt, TheHurt Blogger, came up with this idea to live tweet her life with chronic illness on Twitter for 48 hours. I was so inspired by the amazing interactions that were created because of it that I decided to do my own version of #ChronicLife.
I will include all of the tweets here so that you can see them if you missed them while I was live tweeting, or if you want to take a look at them again. They are presented with the most current listed first.
I learned a lot from this experience. I learned that there a lot of people out there, aside from my mom, on both FB and Twitter that follow my story. I learned that my disease is not in control and that there is a strong likelihood that my current medication regimen is no longer working.
More than anything, though, I was reminded once again about the robust chronic illness community that exists online, and that has helped me so much over the last seven years.
This experiment went beyond lupus and RA, and included others living with other chronic illnesses, as well.
This experience is so much more than a hashtag. It is a movement toward greater awareness and advocacy, so that those with other chronic illnesses can see that our experiences are similar, and so that those without chronic illnesses can get a small glimpse into what our lives are like, living with chronic illness.
I truly want to thank everyone who supported this effort, who favorited and retweeted, and who followed along on the journey. This wouldn’t have been possible without all of you.
Thursday, February 12, 2015
Just want to thank everyone who joined in on this #ChronicLife journey the last two days. I’m grateful for the support. Will blog next week!
I hope people don’t view the last two days as me simply complaining. Wouldn’t be doing this if my life wasn’t impacted by illness. #ChronicLife
Zonked out again. Just got up for meds, etc. Wondering when this cycle is going to stop. Work/school, eat, sleep is all I do. #ChronicLife
Veggie gumbo. BF made a double batch over the weekend so we’d have leftovers for a few meals this week. #ChronicLife
This is the face of pain. Sexy, right? I wonder where this falls on the pain scale. #ChronicLife
Today was a real struggle. Lots of pain and fatigue and I pushed myself too hard. Looking forward to the weekend. #ChronicLife
Invisible illness sucks. I could have used some extra help and kindness today, but I look young and healthy. #ChronicLife
Do I look as tired as I feel? No spoons left whatsoever. #ChronicLife
Two classes down, one to go. And I need a nap badly. Really badly. #ChronicLife
One class down, two to go. And all I want to do is go to bed. #ChronicLife
I have come to find cross-body bags more comfortable than regular one-shoulder bags, but school… #ChronicLife
10 minute walk to subway, 30 minute subway ride, 30 minute train ride, and 20 minute walk to campus. Finally at school! #ChronicLife
Escalator was off and didn’t feel like waiting for the elevator, so I walked up the escalator. Big mistake! Could barely walk. #ChronicLIfe
Good morning! Love my @Keurig so I don’t have to battle with a heavy coffee pot. #ChronicLife #coffeeaholic
Didn’t sleep well at all. Will probably be running on fumes today. #ChronicLife
Wednesday, February 11, 2015
Signing off for tonight. More #ChronicLife bright and early in the morning. Are you all ready for school? Don’t worry, I’m not tiether.
As is my MO lately, I crashed at 8:30. BF just woke me up to brush my teeth and take my meds. #ChronicLife
Roasted veggie pizza and veggie meatballs. Courtesy of the BF. He’s so good to me. #ChronicLife #mymancancook
Post shower #selfie. I was too tired to shower this morning. Now it’s pajama time. #ChronicLife
As tired at the end of the day as I was at the begging. That means fatigue is bad. But at least it’s still light outside. #ChronicLife
This struggle is for real. Even the good days can be a struggle. Working with illness is a struggle. We power through. #ChronicLife
There are bright spots. This makes me happy beyond words: http://medicinex.stanford.edu/medexed-speakers/... #ChronicLife #medx Crazy that people care about my story
You’re hearing it here first: After being on my longest running medication regimen, I believe it has stopped working. #ChronicLife #realtalk
I’m exhausted already. This is one of the most difficult part of living with these diseases. Battling fatigue. @ChronicLife
Been awake and morning meds have been on board for two and a half hours. And I still feel like I am wading through jello. #ChronicLife
10 minute walk to subway. 25 minute subway ride. 20 minute walk to work. Is it bedtime yet? #ChronicLife
Only had a seat on subway for half the time. Took all my energy to hold myself up. #ChronicLife
No makeup this morning. No energy and moving at a snail’s pace. I’ve got to conserve save my spoons for the commute. #ChronicLife
Let my #ChronicLife commence. Up, but not at them. Super stiff and still in zombie.