Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Dawn Gibson
Tuesday, April 17, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with AS Advocate and Spoonie Chats creator Dawn Gibson.
Dan: Welcome to this AS Life Live, which brings together people with AS to share our stories and inspire each other to live our best lives. I’ve had the chance to meet so many amazing, inspiring people with AS, and today is no different. I’m about to meet Dawn Gibson, who hosts weekly Twitter chats called Spoonie Chat to share AS information with others in our community, and to talk about a common issue that many people with AS, including myself, have: getting good sleep, and the AS-related painsomnia that keeps many of us awake. Along with spreading awareness of AS, I’ve heard that Dawn has some really cool hobbies, which she uses to help relax and cope with her sleep issues. Hopefully, she’ll be able to teach me a thing or two. Let’s go meet Dawn.
Dan: Hey Dawn, How are you?
Dawn: Great. How are you doing?
Dan: Great. Great to meet you, have a seat.
Dawn: Thank you.
Dan: So, tell me a little bit about yourself.
Dawn: I am from Detroit. I am, uh, big into Twitter and other forms of social media.
Dawn: I enjoy gardening and, uh, baseball.
I write blog posts for my weekly Twitter chat, and then I do, um, fiction writing.
Dan: So, tell me a little about Spoonie Chat.
Dawn: Spoonie Chat is intended to be a self-care and community organizing chat.
Dan: So, tell me the first time that you can remember having any symptoms of AS.
Dawn: It was in fall of 2001. You know those spoons, I guess you use them for grapefruit, that it’s like serrated on one side.
Dan: Yeah, they are kind of pointy.
Dawn: Right, It felt like someone was taking that and dragging it across my hip. And then I started to get some, um, fatigue and muscle weakness. I went to my doctor and She said, I’m thinking it’s possible that maybe your body’s just trying to clear a virus, or you have an exercise injury. It’s possible you’ll get better, but it’s also possible that this is the beginning of a chronic illness. So we repeated a bunch of tests, and I just kept getting sicker.
Dawn: It took about six months, and she said, you need to see a rheumatologist… It was about a year from the onset of symptoms that I was diagnosed.
Dan: One of the things I saw that you guys chatted about in, um, Spoonie Chat was painsomnia. Tell me a little bit about that.
Dawn: In the Spoonie community, painsomnia is meant to describe the dynamic where pain or treatments for pain interfere with proper sleep and rest. So it could be difficulty in finding a good position to go to sleep in, or staying asleep. It’s hard to stay asleep because pain wakes the patient up. Or it could be that the fear of pain or, um, just anxiety around sleep interferes with sleep.
Dan: What advice would you give people who are struggling with painsomnia related to AS?
Dawn: One of the most important things is to take it seriously. Keep track of what’s happening. You might want to keep a sleep journal, or use an app to keep track of how much sleep you’re getting. The other thing, though, is no matter what advice there is about sleep, what matters most is, what helps you sleep? Not what helps some other person sleep.
Dawn: You know, for me, I have to be nice and warm. I always wear sleep hoodies to go to bed, even if I’m just taking a nap, because I can’t have anything cold on my neck. I prepare my bed to be successful with sleep. I make sure that I have soft blankets. I like to set like a 10 p.m. rule.
Dan: So setting a schedule, setting kind of rules for yourself. What do you do, are there anything specifically you do to relax?
Dawn: I like to watch those fireplace videos. And I listen to ocean waves. And I try and keep a book of, uh, things that make me happy. And then, I do a lot of crafts when I’m up to it. I like to crochet.
Dan: I saw you have a little bag here.
Dan: Maybe you can tell me a little bit about this, this crocheting thing. I’ve never tried it!
Dan: Ok, so, my yarn is over already.
Dan: I got my one little…so then I just do one, the first time.
I did it wrong.
I already did something wrong.
Dawn: Yarn over and pull through two.
Dan: Yarn over…
It’s like when it’s in your hand it looks different then now.
Look, ready, did I mess it up already or is everything set up for me?
Dawn: Just…Yarn over again.
Dan: That was right?
Dawn: Your getting closer.
Dan: What does that mean?
Dan: You wake up in the night, you’re hurting. What do you recommend?
Dawn: Switch positions. I try, um. If heat or cold helps you, try those things. Sometimes I’ll get up and I’ll do some stretches.
Dan: I do that sometimes too, stretches in the night.
And then, I might try some calming sounds. That kind of thing.
To me the key is to keep trying different things rather than falling into a bad pattern of just, you know, watching TV…
Dawn: That kind of thing. Because once you get those bright lights going…or if its something noisy…
Dan: It wakes you up kind of…
Dawn: Too much. Yeah, too much.
Do you have a bedtime routine that helps you?
Dan: I’m on the road a lot, so I’m always in a new bed, it’s a new time that I’m going to sleep, so it’s really hard for me to regulate that. But, I’m going to try to be just a little more, like, strategic, like this is my thing. And then I’m gonna be a diva on the road now. I’ll be, like, I will not have rough sheets!
Dan: Well, Dawn, it has been a pleasure. Thank you so much for sharing your story with us.
Dan: Here are some tips about AS and sleep from the Spondylitis Association of America. Try to go to bed and get up at the same time every day. This helps to synchronize your biological clock. Relax before bedtime. If you use relaxation techniques, this is the time. Just like Dawn crochets, find something that works for you. Try to sleep in a dark, cool, quiet, well-ventilated room. I hope Dawn’s story and some of these tips we’ve talked about today may help. If you need help relaxing, a new hobby might just do the trick. I’m now off to meet with someone else to learn about their AS life. And as always, I encourage you to visit ThisASLife.com for other episodes, and share them on social media. I’ll see you next time.
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