On Tuesday I finally saw my neurologist. There was just so much to talk about that I feel we missed some stuff but we still addressed a lot! We first tackled my lab orders and even though it is not a new order for EMSI (the mobile lab I use) I will be happy if I can just see my own labs even if that means going back to trying to get to a LabCorp every 4 weeks. We also got the clerical roadblock cleared for my Zinbryta. Kind of stupid though, they only send you 1 needle a month. I am not sure if I will have to jump through the prior authorization hoops every month or not so that will be interesting… I just want my first dose already!
I am frustrated. The day before yesterday I was feeling pretty decent so I went for a walk and then did some very light exercises. I also wanted to see if Ritalin would magically start working so I took 20mg. I sat down for coffee, like any other day. After I finished I cleaned my mug, also like any other day. That turned into doing all the dishes which turned into cleaning off the counter tops which turned into me realizing we had no clean rags to work with so I did a load of laundry and then that turned into doing all the laundry in the laundry room and also cleaning and organizing the laundry room and probably more that I am not thinking of. It was too much. I don’t know if the Ritalin helped or if I just got myself going enough to not want to stop but… it was too much.
So I am still doing pretty well, it’s nice, to finally not feel the super Lemtrada fatigue and instead feel the normal MS fatigue which by comparison feels great. For the last 6 months or so I have been going to bed when I start “shutting down” (usually around 8:00pm) and waking up whenever I wake up (anywhere from 7:00am to 9:00am). Lately, I have been going to sleep at 8:00pm and slowly waking up at about 4:00am but not getting up till 5:00am (I am a morning person) and I haven’t felt like I am forcing myself up. Because my brain starts waking up around 4:00am, by the time 5am rolls around I am wide awake and “bored” of lying in bed.