Home alone tonight after Shabbot with my parents. My day has been interspersed with crazy deep napping sessions—an hour here, an hour there. I had my endoscopy yesterday and I can’t seem to shake the anesthesia out of my system. Apparently my gastroparesis is real…and really bad, because even after following the “don’t eat after midnight” rule—nothing was digested and they had to abort the procedure because of a choking risk. I have to go back on Monday and have the whole thing done over again.
Oh, they also did find narrowing in my esophagus. Bingo. Remember this post? I totally called that shit.
I was also finally able to schedule my sleep study…For August 1st.
Urgh…that seems like decades away. This whole process is totally inefficient. Took FOREVER to get the consult, then another week to schedule the study, and now two more weeks before I can do the study. I should know the results that day, but even if they do diagnose with me narcolepsy I’m guessing they won’t just snap their fingers and call me fixed. I’ll have to try different medications…It could very well be mid-September before I get any real relief from the fatigue and I am GOING CRAZY.
I’m so tired I just feel like crying all the time. It’s just this base…deep exhaustion that won’t go away. Every time I fall asleep I wake up and have the most bizarre sensation that I’m not really awake. Pulling my brain out of the “you’re asleep” phase and into the “you’re awake and in a fucking meeting” phase is just out of the question. I’m done. I’m there. I’m at the edge. I can’t compete with it. I can’t fight it. I can’t ignore it. I can only give into it during every spare second I have.
I put a new kit in my car with pajamas and extra pills, fluids, salty snacks and my contact case and solution. I’ve had more than a few close calls the last few days where I felt like maybe I should pull over and try to sleep—but rationalized that if I made the commitment to sleep—I couldn’t make the commitment to get up and so maybe it was best if I just kept going and took my chances. But I think I might be getting to a point where I either have to stop driving, or at least stop driving after a certain point in the day. Like, say, 10:30 AM.
I also kind of flipped my shit on R.J yesterday because he’s not a mind reader. But basically he volunteered to take me to the procedure and then stay with me afterwards at home. He had said he was going to Publix to do the grocery shopping, but didn’t get around to it until past the point where I was already starving and so I had to boil myself some pasta (no vegetables this weekend) and with the anesthesia still in me I could barely stay awake. Oh—and this was after he woke up at 5AM, walked the dog and took off work just so he could get me there and be with me. So I felt like a huge jerk.
I get so frustrated. I just want to be able to set my life up in a way that I can PREVENT stress, prevent situations where I can’t take care of myself—by taking care of things in advance. (Hence my car pajama kit.)
I’m just so tired.
When I think about putting more anesthesia into my system on Monday, I just feel like bursting into tears. I struggled so much this week just to get all my hours in at Global Genes and that makes me feel like such a loser! I got this job specifically so I could work part time and from home. I can’t believe the fatigue is so bad at this point that even that is becoming a real challenge!
I know it all just seems really dreary right now because of the fatigue. I have so many blessing in my life and so many people supporting me and now more than ever do I have people who really GET what I’m dealing with. I got to go to dinner this week with my friend Hanna—and she’s moving back to town and we ate sushi. It’s been a while since I got to have a girl’s night and I’m so grateful.
I’m open to advice by the way. What’s your best tip for beating the fatigue?
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