RA has changed a lot. I can't get away with five hours of sleep anymore - I need somewhere in the area of 10 or so. I have less energy even if I've slept more. I wake up frequently due to pain, and for the same reason I can't lay in bed for hours waiting to sleep.
From mid December through early April of this year, I was dealing with a really nasty reaction to a biologic called Remicade. The first infusion was fine, the second unpleasant, the third knocked me on my ass. Begin four months of chronic fatigue, migraines, unresponsive muscles, and at least 15 hours of sleep a day. Fortunately my MRIs (I had 3: brain, neck, and spine) all showed no signs of lesions, and by early-mid April the worst of the symptoms were beginning to slowly ease up. Since the beginning of this month (May), I've been able to be relatively active - by which I mean my daily steps according to my Fitbit have gone from 600-ish to a few thousand on average. I still can't exercise in my typical sense of using the elliptical, doing an hour of yoga, or attending a ballet class, but I've been able to walk around my apartment complex without exhausting myself, made it up to 5 squats, 15 seconds balancing on one leg, and 3 single-leg elevees. This, considering I was couch-bound and at times couldn't walk for four months, makes me so happy!
Bad thing: over those four months, I got into some really bad sleep habits. The primary one was going until I was utterly exhausted and collapsing for however many hours my brain would let me sleep. Probably necessary then, really not sustainable with having an actual schedule. My primary care doctor has put me on Gabapentin to help with pain management, and it has been amazing for night-time pain. I know it has a bad reputation for side-effects, but so far I haven't had any. Hoping it stays that way. On the other hand, one of the side-effects (drowsiness) was supposed to also help me with sleeping, but that hasn't worked so far. Enter doctor number 4 so far for 2018 - sleep neurologist.
I'm not a fan of the sleep schedule she gave me. I can see how, in theory, it can help, but at 10:30 PM I really just want to go to bed right now! (Sad since I woke up less than 12 hours ago... but still!) So for the next three weeks I have to do the following:
- Take melatonin and Gabapentin at 10 PM
- Get off technology by midnight
- Wait until 1:30 AM to get into bed
- Get up at 9 AM
- No naps longer than 15 minutes
- No caffeine after 4 PM
I don't expect this to be a magic fix for being a terrible sleeper, but it would certainly be nice if it meant no more being able to sleep for only 3 hours at a time. I don't have a problem waking up to alarm clocks. I have a problem turning alarm clocks off and going back to bed. For tomorrow I've put my alarm clock in a hard-to-get-to place across the room from my bed. I've also ordered Clocky, an alarm clock that rolls off the night-stand and around the floor like a crazy-thing at the doctor's recommendation and after watching several YouTube reviews. We shall see.
My idea to help myself stay awake in the mornings is to make some tea and do some physical therapy. I'm thinking doing chores will also help me wake up, and then I'll probably go in to campus to work because if I stay at home there is no way I will make it a whole day of being sleepy and not napping if I work from home. I'm open to other suggestions, too! How do you stay awake in the mornings when you're tired and don't have any set-time commitments?