This blog is supposed to be about me, not about her, but her stuff effects my stuff, all the time. This blog can’t be just about me without reference to her, because my life is all about her. I’m living around the edges of her needs. Each day of mine is only livable in response to her. Take her sleep, for example.
It’s hard to work a job where you never know when your next shift will be, until it begins, and you never know how long it will last, until it ends. You also never know what exact work you’ll be doing, during that next shift, until the work is handed to you. You just have to deal with what comes up, when it comes up.
My (unpaid but not thankless) job as a caregiver is like that. Since I never know when I’ll be paged or what she’ll need, and I can never take a vacation, I joke that I’m on call 25/8. The job is unpredictable because Hazel’s needs are unpredictable and vary from hour to hour; and because life is unpredictable and throws different things at us, and when it throws anything at her, I have to cope with it for her; and because her sleep is unpredictable.
A lot of people with ME have trouble with sleep.
A lot of people with PTSD have trouble with sleep.
A lot of autistic people have trouble with sleep.
A lot of people with Trigeminal Neuralgia and similar chronic intense pain have trouble with sleep.
Hazel is all those kinds of person and yes, has trouble with sleep.
Her longest stretch of no sleep, that I recall, was 44 hours. Her longest stretch of sleep, that I recall, was about 16 hours.
Every now and then I track her sleep, as a part of tracking her health. A recent 9-day stretch went like this:
33 hours awake.
15 hours asleep.
8 hours awake.
5 hours asleep.
28 hours awake.
8.5 hours asleep.
19 hours awake.
5 hours asleep.
23 hours awake.
7 hours asleep.
16 hours awake.
7.5 hours asleep.
15 hours awake.
8 hours asleep.
Her sleep is all over the place. At the end of that stretch, she was sleeping nights and awake days. Throughout the previous 7 days there were times she slept in the day, and nights she was awake all night.
It’s scary, to see how bad she is, at times like that. When she’s gone without sleep for 24 hours or more, I can see the pain in her drawn and haggard face. I can also observe the pain in her behavior. She’s in so much pain and so exhausted she can’t process incoming input like, for example, a question asked of her, and if she does at last understand what I’m asking, she can’t process her own thoughts to formulate a response, or if she does formulate a response, she may not be able to make the physical effort to speak.
Sleep-deprived, she’s at her most sensitive. Windows are shuttered and lights are off. The least sound in her vicinity makes her whimper in pain. The sound of a neighbor playing basketball, the ball gloinging loudly as it’s dribbled on the pavement outside of our house, has her groaning in misery. Her wordless howl when another neighbor revs a loud motorcycle or blasts a car stereo is almost unbearable for me to hear, and if the noise continues long, I would do almost anything to make it stop.
The sound of my daughter howling in pain is something I sense as much in my shoulders and in my gut, as with my ears. It’s an aggravating sound, like fingernails on a blackboard, that would make the most heartless stranger tense their shoulders, and wince. I’m not heartless, nor a stranger, so while I’m tensing my shoulders and wincing I’m also feeling the howl like a knife in my gut: my child is in horrible pain. What can I do?
To stop the noise and ease her pain, I have taken my life in my hands. I have gone outside in my pajamas at 3am to talk to semi drivers and ask them to stop idling their trucks. I have approached strangers and asked them if their motorcycle has to be so loud, and if they really have to work on it right there or could they move it elsewhere. In this road-raging world, conversations like that can get people killed. I’ve been called a crazy bitch and (because I was using a wheelchair) a stupid cripple, when I’ve approached people to ask as nicely as I could, whether they could be quieter, explaining that a very sick person was experiencing pain because of their noise. People don’t give a shit, mostly.
Of course I try to help get her sleep on track and keep it there. Unfortunately, drugs don’t do the trick. When we were both prescribed medications that were supposed to promote relaxation and sleep, both of us responded with an atypical, paradoxical reaction, getting tense and wired on the supposed sleepy meds. Evidently some people are atypical and that’s us.
She does all the “sleep hygiene” stuff, or as much as possible. Some is impossible. For instance, the experts say to use your bedroom only for sleeping. Someone who is mostly bedridden, as she is, can’t take that advice. She does, however, have one side of her bed for sitting up, and the other side for sleeping. She sleeps on the side farther from a window.
Melatonin didn’t help, in normal doses, but in extremely small doses—one drop of a melatonin liquid that recommends a whole dropperful as a normal dose–it seems to mayyyybe be helpful. The jury’s still out on that.
Sometimes, I can nap, if she’s been up in the night and needing me to cook and serve meals or stop noises or clean up spills or whatever. Sometimes I can’t nap. Sometimes I’m stumbling through a sleepless night or worn-out day, just doing my best to provide for both our basic needs, and those will be the days when helpers call in sick, when things break around the house, when landlords keep me on the phone for an hour at a time, when life throws things at me and demands that I handle them instantly.
Anyway, long story short, she doesn’t sleep in regular cycles, it’s been a lot of years and we’ve tried a lot of remedies, and the upshot is that all she can do is to do her best to sleep nights, and all I can do is what parents of infants do: I sleep when I can, and I’m on call day and night. And sometimes I tell people, who expect something of me, “sorry, I can’t deal with this right now.”
And I silently pray she will sleep. I might joke that I’m on call 25/8, but I’m human, and I let myself be human, and take care of myself by saying no to the world, so that I can say yes the next time my daughter needs me.
p.s.; your help keeps me going through the dark and sleepless nights. If you can help me help Hazel, here’s where to go to donate: https://pocketfulofhope.wixsite.com/pathwaysofhealing