I went to bed last night after having an extraordinarily productive day by recent standards. I walked my dog, contacted legislators, wrote my second blog post, bought some lumber to brace my futon, made a video to illustrate the difference between my ons and offs, and even got some planning done over Skype on a long-term photo project.
I was pretty excited, and I was fully expecting to crush it again today. As you can probably deduce by when I’m actually getting around to posting this tonight that’s not how the day rolled out.
Sleep problems are pretty common with Parkinson’s, and although I usually sleep pretty well I woke up around 4 a.m. this morning. I’ve been waking up pretty early lately, but this was a new record for the week. I messed with my phone for a few hours before falling back asleep.
I next woke up around 10 a.m., well past when the extended release levodopa I took had worn off, and I immediately regretted falling back asleep. My body was tight with pain, and not just the typical morning pain that comes with being off, but a more aggressive pain that told me I’d been acting out my dreams.
REM sleep disturbances, which are known to be an indicator that you may develop the disease, are a common symptom of Parkinson’s. I’ve always thrashed my sheets in my sleep, and as disease has progressed I’ve head-butted my walls and even an unfortunate bed partner, among other nocturnal misadventures. If that sounds irritating, it is, but hey, at least I probably don’t need to worry about sleep paralysis.
Becuase I’d slept for so long it was sometime before my meds eased the stiffness and I was even able to get moving, but I was unable to shake the fatigue and ended up back in bed at about noon. By the time I awoke again at 3 p.m. only to get sucked into the Republican debates (bad idea) it was clear I wasn’t going to get much done today. While I had plans to work on my disability claim, write a lengthier post about patient vanity to go along with the video of my off, and to straighten up the house all I managed to do was take the trash out.
Now I know everyone has days where they aren’t as productive as they’d like to be, but you have to understand this is a constant for me. Fatigue is one of the more subtle symptoms of PD, and also one of the most debilitating. Even on days that I sleep well I tend to hit a wall that almost always takes me down for a nap, and If I don’t drink several cups of coffee I’ll end up sleeping intermittently all day long. Even with all that I still struggle; I almost got in a car accident yesterday because I tried to push through my fatigue to go to Home Depot.
As you can probably imagine, this can be extremely frustrating. I love getting things done, and not accomplishing anything makes me depressed, which in turn makes me more fatigued… you get the idea. It’s a real bear of a problem and I can’t just keep throwing coffee at it becuase that just creates all sorts of other problems, so I’m kind of at a loss on how to deal with it.
I guess it’s just one of those days.
