“You look exhausted,” my husband tells me when he gets home from work. He said the same thing this morning, and will say it again at least seven more times before the day is through.

“I am exhausted,” I say. “That’s why I look it.” And I repeat this every single time he tells me later, though sometimes I add in, “I know!” or “It doesn’t help to keep telling me I look exhausted you know.” Or something else along those lines.

See, I really am exhausted. Like my ears have a constant whooshing sound, it’s hard to concentrate, I used to see colored spots in me line of vision and now my eyeballs just hurt. I am TIRED. And there is nothing I can do about it, because my body hates me.

I am childless and while I work fulltime, write fulltime, and take care of a household, my day starts when I say it does, which is a luxury most people do not have. And did I mention I am childless? So, I can sleep in. No one is saying I can’t. And I want to sleep in – oh how I want to sleep in! But despite my body being so tired and obviously suffering from fatigue, it refuses to sleep in!

Every morning I wake up between 7:00 and 8:00 in the morning. Sometimes I stay in bed for thirty minutes, trying so hard to fall back asleep, but it never works out. I go to bed between 12:30am and 1:30am because of things I cannot help – deadlines, work, house stuff that requires my husband’s presence and he does not get home until 7ish – you get the idea. Sometimes I can make it in bed by midnight, and once or twice I have managed 11:30pm, but honestly I feel like meteor showers are more common than when I do manage that. But my body seems to be hooked on seven hour sleep shifts because when I do manage it, usually I get up even earlier than usual!

I usually fall asleep right away, and while I am a light sleeper, my sleep is not restless. I do not toss and turn. But when I wake up, or even stir slightly my body decides that’s it. No second chances – no chance of getting back to sleep.

My husband always suggests taking naps, and I hate him a little (okay, not really, but when he says it, it is not helping 😛 ) when he does because my body won’t let me nap either. If I go lay in bed after an all nighter and try to sleep it won’t happen. My body has its own sense of time, and the daytime is not deemed as appropriate sleep time, or something. My husband can sleep in until mid to late afternoon (not that he gets the opportunity all that often with work, but whenever he does have the opportunity, his body lets him) and fall asleep during almost anything: a conversation, a TV show, even a movie he really wanted to see. (Please note, he only does this when his body is tired, he does not have a sleeping disorder.) He can go upstairs to take a nap, and he naps. Every time. I am not saying this as though it is a bad thing – I am so fucking jealous!

In the last three weeks I have gotten roughly seven hours and fifteen minutes of sleep each night. Most nights are really six and half to seven hours, but a few nights have made it to eight hours, just like one night I got less than three hours. I am so exhausted.

Now I know that anyone with children might be like, “Stop complaining. Bitch, you’re lucky!” But being so tired really, really affects me, and I’m not just talking about how I feel or that I don’t like being tired.

I am a walking medical textbook, essentially everything in my body has something seriously wrong with it (brittle bones, bone marrow disorder, blood disorders and mutations, chronic kidney disease thanks to an autoimmune disease that caused them to fail, fluid in my lungs thanks to the same autoimmune disease, a stomach that won’t empty – yes it’s a thing, and absolute misery, several heart surgeries and I’ll need another in a few years, dozens of brain surgeries and a history of seizures, strokes, a skull fracture, and a compromised immune system because after a year of hardcore chemo to deal with that autoimmune disease my immune system has never bounced back. Oh, and also I’m deaf.), which makes me as my doctors call me “a very vulnerable adult”. It’s a medical term, but I hate it anyway. But they’re really not wrong.

I mean I already had to go to the emergency room at the end of last month, and sleep was kind of the culprit in terms of what caused the thing that landed me there. When my body is run down, something (an organ or condition) is more likely to freak the fuck out. Like seriously. So, I try to be good. My doctors say I should get nine hours of sleep each night. That is what they want for me because of my “issues”. They would be horrified to discover I struggle to just make seven and half hours on average (and am currently failing at that).

But it’s not like I don’t try to do everything I could possibly do. I take Benadryl before bed, not because I have allergies, but because I hope this will be the night that it finally makes me drowsy. It doesn’t. The last time I was in the ER they wanted to give me something for my pain, but I am really anti drugs and medications. Like unless I have to take something to save my life, I really don’t want it. After every brain surgery, my husband has to practically beg and plead with me to take whatever narcotic they prescribe for the first two days that I’m home. And really, I take less than half what is recommended. I just don’t like that stuff. But in the ER, when they said they wanted to give me Dilaudid (hydromorphone) I asked my husband if I should, because it was like I needed permission. Sure, I was in pain, but I would have never said yes to the drug for the pain I was in – I have had so much worse. But OMG I wanted to sleep, and I knew it would knock me the fuck out. And it did.

But that was one night in a hospital, it’s not like certain narcotics are an option to make me sleep. And again I hate taking them, so I wouldn’t, so no worries about getting hooked. That would have happened already if I was going to, particularly with everything I am prescribed and how often it is prescribed to me. I honestly just shred the scripts when I get home because I don’t want a lecture about “staying ahead of the pain” if I refuse to take the script.

But I feel I have gotten off topic, because I can’t focus or write all that well, because I am SO EXHAUSTED!

In a nutshell here’s the situation: I cannot stay asleep and keep waking up before I should, making me sleep deprived and yes I feel it, boy do I feel it. I have no problem getting to sleep and my sleep is not restless when I am asleep. My diet has not changed, I am not preoccupied or stressed, and I don’t watch TV, or stare at any other kind of screen (phone, computer, iPad, etc.) at least thirty minutes before bed (because of recent studies and what not that shows that that can affect sleep quality and even getting/staying asleep).

I have no idea what to do at this point. I already take Melatonin, and might talk to my kidney doctor about upping the dosage or maybe trying something else. But I really don’t want anything that isn’t natural or that could become habit forming. (I have to okay everything I ingest through my kidney doctor.)

Right now as I write this it is mid afternoon and my husband is still asleep. Love does not envy, but OMG I am so jealous of him right now!



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