Community TV: Speaking of Lupus

Getting Better Sleep With Lupus, With Christine Miserandino

05/04/2011

• Christine Miserandino:

  Woo! OK. Lupus slumber party, girls! Get comfortable! 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. OK!

• Christine:

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

• Robin Daniel:

  It’s whenever you can sleep time. (Laughter)

• Christine:

  What do you guys do about noise, or hot and cold?  There's so many issues that affect my sleep.

• Kim Schofield:

  Well, I sleep with a fan and that's --

• Stacie Collett and Robin:

  So do I!

• Kim:

  Because A, for the noise and also because it actually cools your body temperature down and it helps with flaring.

• Christine:

  Where have you been my whole life?

• Kim:

  TIRED! (Laughter)

• Kim:

  I've also found that if I take 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:

  Epsom salt also helps with the pain, and a warm Epsom salt bath helps and it will help relax you, and that's definitely helped me. And stretching -- stretching is BIG.

• Kim:

  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 or some soft music ...

• Robin:

  Dim the lights.

• Christine:

  I'm going to go to your house to sleep. (Laughter) It sounds good over there. But I know that's like lupus joke of the day though -- try to de-stress.

• Christine:

  So then you're going, "I will not stress, I will not stress, I will not stress."

• Robin:

  Exactly!

• Kim:

  I must sleep, I must sleep, I must sleep.

• Stacie:

  You need to get sleeping right now.

• Robin:

  That's what deep breathing does help ...

• Christine:

  That’s good.

• Robin:

  Slow, deep breathing.

• Christine:

  And I for one, I learn to hide my clock, because that clock, it is evil, because you look at it and then all of a sudden you will go, "That's a half hour of less sleep I just got."

• Robin:

  Exactly!

• Christine:

  I have to wake up in five hours, in four hours, in three hours, and it's the countdown to evil wake up time. So I actually learn to put my clock somewhere that I can't see it, because if I can't see it ...

  (chorus) That's a good idea!

• Christine:

  And I found that too an eye mask, it's the same idea of turning off your phone. Because if I can't see the shadows, or the dust on the fan, or all the things that are going to distract me, if I'm forced to close my eyes, I found, you know, blindfold me and put me to bed! (Laughter) Because if I can't see it it's not bothering me. And it might sound silly, but always -- you got to find what works for you, but these little things help so much.

• Stacie:

  Well, for me, I have a lot of hip pain, and I have basically had to learn to sleep on my back.

• Robin:

  Do you use a lot of pillows to kind of prop?

• Stacie:

  Yes, I sleep on two pillows.

• Kim:

  I'll sleep on my side because of my hips, so I kind of use a lot of pillows on my side.

• Stacie:

  Yes.

• Christine:

  Even from my breathing when I had swelling around my lungs, or whatever -- I found that when I was a little more propped up and not so flat, that helped me breathe better.

• Kim:

  By putting pillows under your ankles helps, if ankles are swelling, I usually sleep with pillows.

• Robin:

  Exactly. Exactly.

• Christine:

  I didn’t know that! (Laughter) I’m so glad we did this because we’re over here going, oh, we’re going to lift our ankles! (Laughter)

• Stacie:

  OK, girls, so I’ve heard that exercise is supposed to help you sleep at night.

• Robin:

  Yeah.

• Stacie:

  Really?

• Kim:

  Yes! (Laughter)

• Christine:

  We’re not buying it over here, so convince us.

• Robin:

  Yoga -- stretching, calming kind of things -- definitely helps. Like I started doing the hot water class -- and it’s -- the water temperature is like 97 degrees and above, and you get in there, it feels so good. And water is 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:

  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:

  Yeah.

• Stacie:

  Do you do it in the morning or do you do it?

• Kim:

  And right before I go to bed.

• Robin:

  And in the morning.

• Kim:

  And first thing in the morning.

• Christine:

  And it helps you ...

• Robin:

  Before you even get out of the bed.

• Kim:

  Definitely.

• Robin:

  I can't -- I have no range of motion as soon as I wake up, like I'll HAVE to stretch.

• Christine:

  I feel like the tin man, like, OIL CAN!  I need to be oiled, so I get these things to help!

• Kim:

  Yes, they do.

• Robin:

  I know!

• Christine:

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

• Stacie:

  Right.

• Christine:

  All these things are so important. so if I can do like two or three of them -- I think that ...

• Kim:

  You’ll see a difference.

• Christine:

  I think that’s good, but I have to say -- well -- just talking about all this, I’m exhausted!

• Robin:

  Seriously.

• Christine:

  I think we need to go back to sleep!

• Robin:

  Let’s go.

• Christine:

  Let's go.

• Robin:

  I'm down.