Prednisone Drop

Today is day 4 of my "lower" dose of prednisone.  (100mg/day instead of 120mg/day)

Anytime I drop, I risk a reflare up... THANKFULLY that did not happen.  No new rashness, no pustules.   My face is a bit puffier (even more so than before) but that is apparently still just the prednisone.

I do have some tapering side effects.  I'm back to being exhausted all the time.  The first two days my entire body was sore.  I couldn't go up a flight of stairs, it hurt to walk.  I almost fell asleep in class despite having gotten over 18 hours of sleep.

Today I feel... not normal, but not as horrible.  I'm still really tired.  It's weird to have your body tired but your brain not.  I laid in bed for an hour this morning after waking up because although my brain was awake and ready to go, I think my body could have happily stayed in bed all day.  I had too much to do though.

I have too much to do tomorrow too.  I'm taking Monday off as a Mental Health day since the past week has been kind of a mess.  Although I have bloodwork, a doctors appointment, a presentation and a meeting on Monday... so by Mental Health Day I mean I'm not physically going into work to do work things, and I don't have class.

I think I need to work on my Mental Health Days... I feel like Netflix or HGTV and snacks should be involved.

Something I find... interesting.  Is all the people who ask how I am, how I'm feeling.   I feel really bad saying "pretty shitty".  I'm better than I was when I was in the hospital... but I'm not good.   Yes I'm at school, yes I'm at work... but that doesn't mean I'm better, it doesn't mean I'm healthy, it doesn't mean I feel well... it means I'm doing what I have to do to exist... and to survive mentally.  I think if I didn't have class and work I'd go insane from boredom.  I really need the normalcy.

I need the little social things that I occasionally feel well enough to do.  A friend of mine and I went for supper last night then drove around talking (she drove... thankfully... I didn't have the energy for that).

I also have found that I get really annoyed with people, being around people a lot, and it's not their fault. It's hard because I usually love people.  I think it's because I feel like I have to be "on" the entire time, and it's so damn exhausting.  I love you... but I don't want to talk to you after 3 hours of class. I'm tired. The mere thought of putting a coherent sentence together and have it come out of my mouth makes me want to cry.  Trying to follow conversations too... so much talking. Shhh.

On Monday I find out how my liver is doing with all this tapering.   The doctor said eventually I will only need to see her every second week and only need bloodwork once a week... Eventually means she doesn't really know when, but it's because it is based on how consistent my liver enzymes are.

I need to talk to her, or the Internal Med doctor about the weird cramping.  I think I'm deficient in magnesium or potassium or something from the prednisone, but I'd like to be tested, or have a doctor's opinion on it.   I get these horrible cramps in my calves and arches of my feet that feel like my muscles are being torn apart.  I got one in my right hand today, it felt like someone was twisting my palm and pulling it.  

I need to remember as I wean, that tapering doesn't mean I'm magically better, it's a process, I'm not going to be be "better or "well" for another few months and I still need to take care of myself in the mean time.

I sometimes feel like this whole thing was the world telling me to slow the fuck down because for years I didn't listen.  I'm listening now... or trying my hardest to at least.