Reviewed by Louise Chang on July 01, 2011

Sources

Christine Miserandino, Author, The Spoon Theory, Founder: ButYouDontLookSick.com; Kim Schofield, GA Lupus Registry Project; Stacie Collett, Living with Lupus over 6 years; Robin Daniel, Living with Lupus over 8 years

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Video Transcript

CHRISTINE MISERANDINO: Hey, come on in! Nice to meet you. [INTERPOSING VOICES] Let's move over here. Oh, wow, look at that. Woo! OK, lupus slumber party, girls. Get comfortable.

KIM SCHOFIELD: I'm trying. I'm moving.

CHRISTINE MISERANDINO: OK, we have our blanket. We have our pajamas. Wait, do you have that snuggly blanket that you need?

ROBIN DANIEL: Oh, this is mine. This is my [INAUDIBLE].

CHRISTINE MISERANDINO: So if it is the lupus slumber party, is it daytime or nighttime? Who knows?

ROBIN DANIEL: It's whenever you can sleep time. [LAUGHTER]

CHRISTINE MISERANDINO: And what do you guys do about noise, or hot and cold? There's so many issues that affect my sleep.

ROBIN DANIEL: Oh, gosh.

KIM SCHOFIELD:Well, I sleep with a fan.

ROBIN DANIEL: So do I.

STACIE COLLETT: So do I.

KIM SCHOFIELD:Because, A, for the noise.

STACIE COLLETT: The noise.

KIM SCHOFIELD:And also because it actually cools your body temperature down.

ROBIN DANIEL: Yeah.

KIM SCHOFIELD: And it helps with flaring.

CHRISTINE MISERANDINO: Where have you been my whole life?

ROBIN DANIEL: Right.

KIM SCHOFIELD: Tired. [LAUGHTER] I've also found that if I took a nice warm shower in the evening, that kind of winds me down, and it starts to set me-- that my body starts saying, OK, it's time to go to bed.

ROBIN DANIEL: Epsom salt also helps with the pain. And a warm Epsom salt bath helps, and it'll help relax you. And that's definitely helped me. And stretching. Stretching is big.

KIM SCHOFIELD: And I start to de-stress. I start to kind of breathe a little slowly. I kind of lay down and get myself in position, start moving a little bit, to just calm me down a little bit. Because stress is so overwhelming, and it keeps you tight. So I may put on a little jazz, and some soft music.

ROBIN DANIEL: Dim the lights.

CHRISTINE MISERANDINO: I want to go to your house to sleep.

KIM SCHOFIELD: Dim those lights a little bit.

CHRISTINE MISERANDINO: It sounds good over there.

ROBIN DANIEL: Yeah.

CHRISTINE MISERANDINO: But I know that's like Lupus Joke of the Day, though.

KIM SCHOFIELD: Yes.

CHRISTINE MISERANDINO: Try to de-stress. So then you're going, I will not stress, I will not stress, I will not stress.

ROBIN DANIEL: Exactly.

KIM SCHOFIELD: I must sleep. I must sleep. I must sleep.

CHRISTINE MISERANDINO: You need to sleep right now!

ROBIN DANIEL: That's where deep breathing does help.

CHRISTINE MISERANDINO: OK. That's good. And I find, too--

ROBIN DANIEL: Slow, deep breathing.

CHRISTINE MISERANDINO: Like I, for one, I learned to hide my clock. Because that clock, it is evil.

ROBIN DANIEL: Yes.

CHRISTINE MISERANDINO: Because you look at it, and then all of a sudden, you go, that's a half-hour of less sleep I just got.

ROBIN DANIEL: Yep. Exactly.

CHRISTINE MISERANDINO: I have to wake up in five hours. In four hours. In three hours. And it's the countdown to evil wake-up time.

ROBIN DANIEL: Yeah.

CHRISTINE MISERANDINO: So I actually learned to put my clock somewhere that I can't see it. Because I can't see it-- ROBIN DANIEL: That's a good idea.

KIM SCHOFIELD: That's a great idea.

CHRISTINE MISERANDINO: And I found that, too, an eye mask? It's the same idea of turning off your phone.

KIM SCHOFIELD: Yes.

CHRISTINE MISERANDINO: Because if I can't see the shadows or the dust on the fan, or all the things that are going to distract me--

KIM SCHOFIELD: That's true.

CHRISTINE MISERANDINO: If I'm forced to close my eyes, I've found-- you know, blindfold me and put me to bed. Because if I can't see it, it's not bothering me.

KIM SCHOFIELD: Yes.

STACIE COLLETT: That's right.

CHRISTINE MISERANDINO: And it might sound silly, but you've got to find what works for you. But these little things help so much.

STACIE COLLETT: Well, for me, I have a lot of hip pain. And I have basically had to learn how to sleep on my back.

ROBIN DANIEL: Do you use a lot of pillows to kind of prop your--

STACIE COLLETT: Yes, I sleep on two pillows.

KIM SCHOFIELD: I sleep on my side because of my hips. So I kind of use a lot of pillows on my side.

STACIE COLLETT: Right.

CHRISTINE MISERANDINO: Yes. Even for my breathing, when I had swelling around my lungs or whatever, I've found that when I was a little more propped up and not so flat, that helped me breathe better.

STACIE COLLETT: Yeah.

KIM SCHOFIELD: Or putting pillows under your ankles helps, because the ankles are swelling.

ROBIN DANIEL: Exactly.

KIM SCHOFIELD: I usually sleep with pillows under my ankles

CHRISTINE MISERANDINO: Look at me. I didn't know that. [LAUGHTER] I'm so glad we did this. Because we're over here, going, oh, we've got to lift our ankles.

ROBIN DANIEL: Right.

CHRISTINE MISERANDINO: OK.

STACIE COLLETT: OK, girls, so I've heard that exercise is supposed to help you sleep at night.

KIM SCHOFIELD: Yes.

ROBIN DANIEL: Yeah.

STACIE COLLETT: Really?

[LAUGHTER]

KIM SCHOFIELD: Yes.

CHRISTINE MISERANDINO: We're not buying it over here, so convince us.

ROBIN DANIEL: Yoga.

KIM SCHOFIELD: Yes.

ROBIN DANIEL: Stretching,

calming kind of things, definitely helps. Like, I started doing the hot water class, and it's-- the water temperature's like 97 degrees and above.

STACIE COLLETT: Oh, wow.

ROBIN DANIEL: And you get in there-- it feels so good. And water's just amazing for arthritis, and especially warm water. And so I get in there and stretch, or even stretching on the bed. Like I'll just-- pulling your knees up to your chest.

KIM SCHOFIELD: That's what I do. I kind of do the range of motion, move the joints back a little bit. I stretch a little bit. I bend. And do a little light stretching.

ROBIN DANIEL: Yeah.

STACIE COLLETT: Do you do it in the morning? Or do you do it in--

KIM SCHOFIELD: I do it right before I go to bed.

STACIE COLLETT: OK.

ROBIN DANIEL: And in the morning.

KIM SCHOFIELD: And in the morning, first thing in the morning.

STACIE COLLETT: Probably helps you go, huh?

ROBIN DANIEL: Before you even get out of the bed.

KIM SCHOFIELD: Definitely.

ROBIN DANIEL: I can't-- I have no range of motion as soon as I wake up. Like, I have to stretch.

CHRISTINE MISERANDINO: I feel like the Tin Man. Like, oil can!

ROBIN DANIEL: I know.

CHRISTINE MISERANDINO: I need to be oiled! So I guess these things help.

KIM SCHOFIELD: Yes, they do.

CHRISTINE MISERANDINO: And I've heard that exercise during the daytime gets out that energy so that at night, you are thoroughly exhausted and ready for sleep.

ROBIN DANIEL: OK.

CHRISTINE MISERANDINO: All these things are so important. So if I can do two or three of them--

KIM SCHOFIELD: You'll see a difference.

CHRISTINE MISERANDINO: I think that's good. But I have to say, girls, just talking about all this? I'm exhausted.

ROBIN DANIEL: Seriously.

CHRISTINE MISERANDINO: I think we need to go back to sleep.

ROBIN DANIEL: Let's go.

KIM SCHOFIELD: I'm with you.

CHRISTINE MISERANDINO: Let's go.

STACIE COLLETT: OK.

ROBIN DANIEL: I'm down.