How I Sleep (Or Don’t) – A List, Part 1

Recently I looked up the topic for the December edition of the Disability Blog Carnival and discovered that it related to sleep.

“Hm,” I thought. “Didn’t I write something about sleep at some point?”

I searched all my blog posts (published and draft form) using the keyword “sleep,” and discovered this blog — in draft (unpublished) form. I wrote it the second week of February 2010, three months after my service dog, Gadget, died, and two weeks before Barnum, my puppy, arrived. I don’t know why I didn’t post it then, because it was pretty much done.

Actually, I do have some idea, now. I recently read a list of signs and symptoms of grief, and a big one was inability to focus or to finish simple projects. That’s been happening to me for a year, and I’ve been feeling guilty about it, wondering what the  heck was wrong with me that I couldn’t function even though, physically, I’m overall doing better. Now I realize it was probably the grief and not necessarily under my control.

Now I’m having grief-induced inability to sleep because of the anniversary of Gadget’s death, and another recent loss unrelated to dogs, which I will post about . . . eventually.

Of course, my sleep changed drastically once a puppy arrived on the scene. There was the oh-so-fun sleep deprivation due to puppy care, which I don’t think I documented — possibly due to being too busy and sleep deprived.

Reading this post now feels so strange. There’s so much I’d forgotten, or maybe blocked out. Reading about it brings it all back so clearly and painfully, like the night Gadget vomited all over the house. I can smell it when I read it. This might seem like a strange thing to say, but I’m glad I wrote about it and saved it, because that was a critical turning point in Gadget’s life and death.

It’s important for me to remember what it was like then so I can better understand who I am now. Also, every piece of memory of Gadget’s life is precious to me, even the bad ones.

Of course, I’m compelled to write another post about how I’m sleeping these days, which I have started. . . But who knows when I’ll finish? Hopefully in time to submit it to the carnival. Meanwhile, here’s a chronology of how I slept — or didn’t — in the months, weeks and days before Gadget died, and then after.

February 13, 2010

Recently, Andrea Martin of It’s Time to Get Over How Fragile You Are told me that she often posts lists, because she likes to read lists, herself. I agree. Lists are soothing. They are a way to organize the world. I’d already started another post that was essentially a list, and now I feel I have permission to write more.

I’ve had insomnia since I got myalgic encephalomyelitis (ME)/chronic fatigue immune dysfunction syndrome (CFIDS) in 1995, and since then, there have been variations on that theme, such as an even more extreme sleep schedule caused by chronic Lyme disease, which led some friends and I to call ourselves “The Vampire Girls.” Yes, I’m a vampirette.

Gadget’s dying and death caused further sleep changes. Here they are.

Gadget Is Sick, but Not Dying

• I go to sleep after massaging him, loving him up, pilling him.
• I wake up to pee throughout the night and morning (because I go to sleep late and wake up late), and every time, I check on him, pat him, give him some supplements or medications.
• If I can, I go back to sleep.
• If I can’t, I rest, take supplements and medications, and try to get myself as functional as possible to be able to take him for a walk.
• If it looks like it might rain, I try to get a weather forecast to take him for a walk before the rain, because powerchair electronics can get fried by rain, and Gadget doesn’t like thunder.
• I get between five and seven hours of sleep. Since I need ten to function decently, I build up a sleep debt.
  

  A cool spot on the floor.

Gadget Is Going Downhill

• I give him pills on at one- or two-hour-interval schedule all day, every day.
• I snuggle him, cry on him, rub his ears, tell him it will be okay, we will get through this.
• Eventually, either he or I decides he should get off the bed. When he decides to get off, it’s because he feels hot all the time now, and he prefers to lie on the cool floor, by himself. I ask him to get off when I can’t stand the (physical) pain of him touching me or moving the bed anymore.
• I stay up trying to eat or take meds or write my PCA to-do lists for the next day until I literally pass out — see below — because there is so much to do to take care of Gadget, I don’t get to the other stuff.
• I can’t turn my mind off. But my body takes over, and I lose consciousness propped up, pen or water or medication or food in hand or on my lap, glasses on my nose.
• When I wake up, I’m confused. Why am I sitting in a wet spot? What time is it? Why is there food on my legs?
• Once the confusion passes and I realize I passed out from exhaustion again, spilling my water bottle, dinner, pills, etcetera. I clean myself up and check on Gadget. If it’s a good time, I give him a supplement or medication.
• I put my hand on his heart to feel it beating and reassure myself.
• I sleep less than six hours a night.

We're tired (but I try to hide it for the camera).

Gadget Is Definitely Dying

• I do most of the above, except that everything gets harder as hospice progresses.
• I give him pills on a one- or two-hour-interval schedule all day, every day.
• I snuggle him, cry on him, rub his ears, tell him it will be okay and cry because I know it won’t be.
• He gets off the bed before I want him to.
• Sometimes I go to lie with him on the floor, but that interferes with the coolness he has sought of lying alone on the floor (no longer on one of his dog beds), so he gets up to move to a cooler spot.
• If he wants something I’m eating before I go to sleep, I invite him on the bed and let him finish my plate. For once in my life, I don’t have much appetite anyway.
• I still pass out trying to deal with the things I couldn’t get to because all my energy has gone to Gadget.
• I wake up multiple times a night to check on him (and to pee, and to put away or clean up whatever has spilled or was perched on me when I lost consciousness).
• Near the end, he sometimes vomits during the night. In the beginning, I leap out of bed at the first sound to move his or my bedding out of the way and to clean up.
• Later, I am too sick. One night he vomits at least twice that I know of — it is the smell that wakes me — but I’m so exhausted, I literally can’t move to clean it up. I check that he’s okay and go back to sleep. My morning PCA tells me he has vomited all over the house. This is a few days before the end.
• I add anti-nausea shots to his routine, and he feels better. He eats again. He doesn’t throw up.
• I still check for vomit every morning.
• I sleep two, three, five, eight hours. Sometimes, if Gadget’s most-loved PCA is here, I can nap an hour or two during her shift. Normally, I’m completely unable to nap.
• At the end, the nights are bizarre. Two nights in a row, he wants to go out at 2:00 in the morning. I go out with him, and he wanders to the edge of the yard. I open the gate, and we go for a meandering walk. I’m wearing slippers and no coat.
• The last night, it is well below freezing. Gadget is always hot now, and he wades into a pool by the side of the road, breaking through the layer of ice to get to the water. Then he can’t get out. I get in to help him, my leg going numb, and I am stuck, too. I have believed the stories about mothers lifting cars off their infants. I believe my body will do anything I require to save Gadget. Betsy comes looking for us and hauls us both out of the water. There is more to this story, but I will tell it another time.

At the end, even in frigid weather, he waded in up to his armpits.

After Gadget’s Death

• The first two nights after Gadget dies, I fall asleep, and sleep deeply, for the first time in months.
• Then, the death dreams start.
• Eventually, those fade.
• I awake looking for him every day.
• Sometimes I wake up crying for him. Then that fades.
• Eventually I only look for him sometimes. When he’s not there, I feel a weak blow of sadness, then I distract myself.
• I stay up much too late, even though I don’t have a good excuse anymore.
• I can’t bear to go to sleep, because the room is so alone and empty.
• Not just the room: I am alone and empty. There should be a Gadget here, and there isn’t, and I keep putting off sleep because my day feels unfinished — there was no goodnight massage, no chat or murmurs, no hand on his moving chest.
• The room is too quiet, all the time. There is no breathing or snoring or barking. There is no sound of the door handle turning at 10:00 AM when Gadget’s favorite PCA arrives. She just arrives, and I sleep through it, until she enters the room, and then because of the too-quietness, her tiniest noise wakes me.
• I notice the empty, and it makes me fitful.
• I start napping again. I get migraines, or I’m just exhausted, and I go to sleep for a couple of hours. I wake up at the time a reasonable person would go to sleep (11:00 PM, 1:00 AM, 2:00 AM) and then I’m awake till dawn.
• Someone from the job I left because I was too sick and grief-stricken to function, harasses me by email and phone. I wish I had my protective, loud, lion-heart in our den.

I pass out with my stuff around/on/under me

When I Cry

• Normally I don’t cry, but when I do, it’s at night, before sleep.
• I like to be alone to cry.
• I feel closer to Gadget when I’m alone, because I see him, and there is nobody who can get in the way of my vision of him.
• Tonight, I fell asleep at 9:00 PM, which is about seven hours before I normally fall asleep. Lights on, stuff strewn across my bed, no dinner or night-time meds administered, I just pass out.
• My PCA leaves without brushing my teeth, because sleep is so hard to come by, we don’t want to wake me up.
• I woke up at 11:00 PM anyway.
• I started thinking about this list I wanted to write, this blog, and of course now I cannot fall back asleep.
• It’s 2:00 AM. It will likely be several hours before I fall back asleep.

The gist

• I used to wake up to someone who was overjoyed that I was awake.
• No matter what kind of mood I was in, how I felt, what the plans were for the day, my waking up was exciting. It was an event.
• It’s difficult to fall asleep surrounded by absence. It’s beyond difficult to go to sleep knowing there is no one to wake up to.

Gadget's smile.

* * * *

Back to December, 2010, almost a year later.

I know I’m behind on comments, but I really do love and appreciate them. I’ve just been bogged down in, well, grief. But I will respond!

-Sharon, the muse of Gadget, and Barnum (someone to wake up to)