When Even Sleep Hurts

Groggy and out of it, I sat up in my bed and could hear my husband reminding the kids they could call his number at any time tomorrow.

If you need me, remember how to use the phone, right? If Mom talks like that again, just call.

And it was then I realized I had fallen asleep, in bed with the kids while they watched tv, and I must have talked in my sleep and scared them enough to have them run to get their Dad.

So I jumped out of bed to find out what I said and how scared they were. If I scared my kids I need to go hug them and tell them it was ok. To go comfort them. To tell my husband I was fine, I just dozed off. I had a long day of treatment and then taking care of the kids after treatment…all I did was doze off while we watched tv at 845pm. How horrible could it have been, I just dozed off for 20 minutes????

Before I could even get a foot on the ground, Aaron was in the room trying to get me to lay back down.

Go to sleep. Just get lay back down. 

But the kids

The kids are fine, just go back to bed

No, I need to see the kids

I just feel asleep, what did I say???

As it turns out, I apparently told the kids to have their father put the penguins away before bed. Or something like that. Scared, my oldest went to get Aaron who came upstairs and put them in bed.

Despite my husband’s urging to just lay down I went to see the kids. Hugged them both. Told them not to be afraid. We all talk in our sleep sometimes. I had just been sleep talking. I’m so sorry it scared them.

It was bedtime, we were in our pjs, in bed, watching tv, and I dozed off. That’s all. It was nothing to be afraid of. They hugged me and hugged me and wanted me to lay with them. But I knew if I laid down I’d fall back asleep and risk talking again, and I needed to go let out the tears welling up inside me that needed to burst out. I was having a hard enough time keeping them from exploding all over their stuffed animals and fuzzy blankets.

Holding it in I went back to my room and realized I needed to take medication, which means I needed water, which means I needed to face Aaron who I also didn’t want to cry in front of. He didn’t need it. His shoulders have enough on them, they don’t also need to be soaked with tears and snot.

So I held my breath and got what I needed downstairs and came upstairs again to find myself too emotionally exhausted to even cry.

I can’t be awake without scaring everyone.

I can’t be asleep without scaring everyone.

And what is worse(?)…I feel better, physically. But that doesn’t seem to matter. Labs are improving. My body is improving. But it DOESN’T SEEM TO MATTER.

My kids and my husband are what keeps me going. To cause them any worry or pain or to scare them… destroys me.



  1. I just…I wish there was something else I could do besides offer good wishes, you know? Something meaningful, more meaningful than I’m sorry or give yourself a break; you deserve it, or I’m thinking of you. I gots nothing. Other than I am thinking of you. I do wish there was more I could do. You are one of the most amazing, strong women I’ve ever “met.” The love you have for your family, the will you have to kick the shit out of lupus — amazing. Know you are loved. You are rooted for. I just wish I had more.

  2. I don’t suffer from all that you are dealing with, and I am not on all the medication you are, but I talk in my sleep all the time. I usually lay down with my son as he falls asleep, and some nights I doze and go just far enough in that I babble. He usually wakes me up asking me what did I say, why did I say that. He is 5. I tell him it is a waking dream, and nothing to worry about. It is not uncommon, but your kids may not know that because it is new behavior for you. I don’t know if it is because of your medication, but maybe it will comfort them to know that a lot of people talk in their sleep, and it is not a sign of anything terrible. I have been known to sit up in bed and whisper entire conversations I am having with whomever in my dreams. I don’t find it restful when it happens, but that is another story. Please don’t beat yourself up over it if you can avoid it. It can be weird to see someone in this state, but usually you can wake the person up just enough to get them to go back to sleep or wake fully up.

  3. I only have my compassion and my prayers to offer you. I wish you so much consolation; your children will grow into incredible, loving, and considered people because your mothering took this shape instead of the shape you imagined. My husband bathed my father in the last months of my father’s life; I wept. I loved him more than I thought possible. I felt indebted to him. And then time passed, and he annoyed me and life felt normal again…Your normalcy lies ahead, with your husband and with your kids, but it will be deeper, and sweeter, and better than before because of this time. May peace descend upon you as you wait for that time to come…

  4. I’m so sorry you’re experiencing this, and wish you well to recovery. It seems like you have a very loving family.

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