I know, I know

JESSE: You are waking up way too early, which causes you to crash all day.

ME: I know.

JESSE: It's really messing up your sleep schedule.

ME: I know.

JESSE: You need to readjust what time you take your meds.

ME: I take my meds at the same time every night because it's the ONLY thing I can control about them. It's reasonable enough to take them between 8 and 9 PM, instead of 1 or 2 AM.Trust me, if I could go to bed at 9 PM and wake up at 5 AM, I WOULD. I'm not doing this on purpose.

JESSE: I know you're not doing it on purpose. It's just that we need to get this figured out.

ME: I know. I know.

I've had three days this week where I've done nothing but sleep all day, all night. I've also had four days this week where I've been extremely active, doing all kinds of errands, chores, conversations with Jesse, etc. Jesse asked how it is that I sleep so much.

My reply was that I probably push too hard on the good days and wind up paying for it the next day - and often the day after that as well. Lupus fatigue is not like normal fatigue. One day of rest does not equal one day of burning it hard, as most people would expect it to be.

Sometimes you just wind up paying for those good days in multiple increments - one of those being daily energy. It's erratic, it's unpredictable, and it's extremely frustrating.

It is also something I don't have much control over. Telling someone to just go back to sleep is like telling a night owl to just go to bed earlier. In other words, it's likely to get you an eye-roll at best and a rip-roaring argument at worst.

Still, it's 1:30 AM. I'll try laying back down. Even a couple more hours has to be better than nothing, right?

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1060729.html
Yep. Fatigue from systematic diseases like that don't work like normal fatigue that everybody has.
It's... you tire out earlier than others and the rest from the nightsleep that makes others refill their batteries doesn't fully cover the needs of rest that your body wants to have to refill his batteries. Speaking, even taking naps over the day doesn't affect your nightsleep, you do them, but still you go to bed at the same time everyday like all other people too. And you can't help it. The shit just comes and takes what it wants...
Only thing you can do when it comes at the same times of the day is integrating it into your daily schedule for the day.
As I understand it the fatigue over the last 4 days is due to not only Lupus. Tuesday was when the step down of her Prednisone, I believe that is why she is sleeping so much, it is what it is. The last time she tapered off she had the same issue with sleeping a great deal. I just do not want her to miss out on taking care of the things that must be done during the daylight hours. Especially seeing I cannot do it for her.