Brother-in-law, Allen, with his two biggest educational supporters, my sister, Heather, and his Prof. & Mentor. |
If sleepy time was confined to my bed I'd call this the normal fatigue side-effect that I get with every therapy, but it's not.
Like I said yesterday, I'm forming a routine like I haven't had in years. I'm waking up able to take care f myself and X in the morning! How amazing is that?
I'm also able to do afternoon and dinner routines, which is absolutely fabulous.
But did I mention in the middle of the day when I'm, say, meeting with my NP, in family family, or watching my brother-in-law present his Master's thesis (Go, Allen, Congratulations!), I doze off.
Dozing off while watching Allen present his thesis reminded me a little bit of high school, but unlike high school, yesterday I was doing everything I could to stay awake!
Allen, presenting his Master's Thesis on Lean Management of Medical Device Products, one of his final tasks before graduating from Mass. College of Pharmacy. |
But then again, almost immediately after, mint in mouth, the same thing happens again, but this time I'm distracting from Allen worrying people about choking!
Hopefully I won't look like a dying narcoleptic today when I have my "official" interview with the VT Journal publisher as a freelance writer. Cross those fingers.
This problem started being an issue last week during our families very first therapy appointment.
Yes, we are now all in this together to be sure we stay sane.
And this little monster stayed home, but I couldn't let Halloween pass without showing a picture of my Spanish wrestler. (where does he come up with these ideas?) |
The therapist has invited just J and I back to discuss things we may not want to in front of X. I thought she meant relationship issues, fighting, now I'm pretty sure she means the prognosis of my disease.
I've only seen people with end stage disease fall asleep all over the place like I do.
I'll do it when I'm eating, walking up to my food fallen around me. I'll do it when drinking, being awoken only by the cold splash of whatever I hoped to get in my stomach.
I spoke with palliative care about this and we switched my pain medications to something more easily detoxified through the body, especially medications that took altered kidney function into account.
My kidneys are running fine now, but it's predicted it may not stay that way. I'm thankful for the painful but life saving metal stent that's gotten me here. I'll give that cross up to God. It, honestly, feels like such a small problem alongside others.
Of course with me being me, with my luck, the next day palliative care called, and I was told I couldn't use the new med due to my skin allergies.
I'll go back in two weeks. Hopefully this will pass by then.
2 comments:
Hey, I've seemed to have developed a bit of narcolepsy as well although can't imagine falling asleep as I take a sip of water... I wonder if there is such a thing as treatment/disease related narcolepsy? Anyway, I hope you get the freelance writing job, that sounds like a lot of fun and wondering if I might be able to find a gig like that myself... Take good care and know people like myself are cheering you on to keep going no matter how tough it is. Cheers, chris
This narcolepsy posting, completely useful..
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