I can tell tonight is gonna be another knees-too-swollen-to-sleep-in-pajama-pants night. Shorts are my friends. #ChronicLife
— Elizabeth Barone (@elizabethbarone) February 5, 2015
When I started tweeting for #ChronicLife, I hoped to give relatively healthy people a glimpse of what it’s like to live with invisible chronic pain. I wasn’t prepared for what I would learn! It was truly an amazing experience. I was able to connect with other people living with chronic pain—even some people I was already following. All this time, and I had no idea that so many other people were dealing with the same things. I also got a lot of good advice from other spoonies (people with invisible illness).
I also posted a basic day-in-the-life on my personal Facebook. I think a lot of my friends and family gained a better understanding of what I go through. Through all of this, though, I learned some important things about myself.
- I am coping better than I thought. I’ve developed quite the tool kit for combating the pain: heating pad, Tiger Balm, pain medications, electric blanket, journaling, and more. I’ve learned to rest when I need to. (Well, okay, I’m still working on this. I do tend to push myself to get “just one more thing” done.)
- Letting my body get extra sleep is nothing to feel guilty about. I tend to sleep in a lot. I have a hard time falling asleep and wake up in pain several times throughout the night. I always feel ashamed when I wake up in the afternoon, half the day gone. By talking to others, though, I learned that I’m not the only one who needs the extra sleep, and that it’s totally okay to allow myself to rest.
- I am able to see the positive side of my condition. Yes, I have lost a lot—including jobs and the ability to get my Bachelor’s degree—but this has also been a blessing in disguise. If it weren’t for my illness, I would probably still be in the web design industry, working at a job that I hate. Now I’m able to dedicate my time to writing. Being without the steady income is a little scary, but I’m happier than I’ve ever been.
- I am so blessed to have so many amazing people in my life. I truly have a dream support team. From my husband doing little things like opening jars before I even ask, to my therapist offering suggestions to keep my spirits up, to my friends understanding when I’m too sick to get together, I am one lucky girl. Throw in my awesome readers, who cheer me on, and I could not ask for more.
- There are endless resources for support and management on Twitter. I sort of already knew this, but my mind was blown by how many more I discovered in the last 24 hours. I can already tell that people like @ArthritisAshley and @RA_Kitchen are going to be very helpful.
I think I’ll be using the #ChronicLife hashtag more often. I heard others say the same.
Do you live a #ChronicLife? Do you know someone who does? What have you learned?
PS: Big thanks to Britt at Hurt Blogger for starting this movement! You should be proud, lovely!