I’m tired of all the things I have to answer to before the sun is even up. At 6am I have to take my first dose of steroids for the Addison’s (No, not “make your balls smaller and muscles bigger” steroids) but I’m probably up before then. By the time 6am swings around, I’ve been up for 2 hours listening to music because I hurt everywhere. My nerves are on fire. The only thing that helps with this pain is the tramadol, and lately even that’s been iffy. The problem is even though it provides some relief, it also keeps me awake like a cup of coffee. So I can lay there and hope I fall asleep even though I hurt (which sometimes actually happens because I’m so used to it) or I can lay there and feel a little better but feel like I just drank a Monster.
I’ve been getting pretty severe nasal congestion lately, and that paired with the dry mouth from the Benlysta sometimes makes me wake up in a panic. I can’t breathe, and I’m so thirsty I may as well have been stuck on some fucked up island for 3 days. Good luck sleeping after that.
I am also having a problem with acid reflux. When I wake up in pain I also wake up with an angry burning stomach, and sometimes a sore throat. The sore throat could be caused by lots of things, like the Lupus, or allergies, but I think sometimes it’s the acid too. The problem is that there are some medications with which I cannot take antacid. Some medications make it worse, too. So I have to take meds and temporarily make it worse for a half hour til it’s been absorbed and I can finally take the antacid. I have gotten up to eat food before, but that’s a pain in the ass. Once I’m completely awake from doing something like that, there is no going back to sleep.
The sun coming up is a huge factor in making me wake up early. If it’s not pitch black in my room, I don’t sleep. I’ve managed to remedy that with a sleep mask, for the hours in the morning that I actually do sleep.
I think I’ve wrote about the itching before, that keeps me up too. My leg pain and restlessness is sometimes accompanied by itching, which I perceive to be nerve-related. Some people suggest benedryl but it’s not an allergy, and I don’t have good reactions to benedryl anyway.
Sometimes when I take meds that make you drowsy, it causes me to have sleep apnea. So rather than knocking out, I wake up every 5 minutes in a panic because I stop breathing. The drowsy effect seems to depress my respiratory function. The weird thing is, I still have to take a tiny dose of something to make me sleepy. If I don’t take anything at all, I will lay there for hours without ever getting tired, and the next day I will have heart palpitations all day from being without sleep. I’ve been afraid to take the hydroxyzine for the itching because I don’t know what it will do to my breathing, and that means I have to waste an entire night of sleep to find out. And I have to plan on taking it, I can’t just take my usual dose of sleep aid and then wake up halfway through the night and take the hydroxyzine when I am itchy, because combos of meds make me have the apnea too, even if they are hours apart. It’s a drag having the sleep apnea because I am so tired, but I have to get up and occupy myself for a couple hours to make it go away so I can actually sleep. It’s a constant fight to balance everything.
You know what the bitch of all of this is? The mornings I actually have to get up early to go somewhere, are the mornings my body is like “Hey! I’ll let you sleep in today!”