This is really a comment/question/whine/search for whether others have been in this spot that's more about the psychology of being where I am than any medical advice I'm needing.

Since I've been back at work, I'm having a really hard time doing everything I need to do to maximize my chances of being able to swallow again. Here's what I have to do every day:

I need to stretch my jaw using the therabite & times a day. I am doing the high-pitched squeal throat exercise aiming for 4-5 times a day. Then there's the swallow holding your tongue exercise--2 times a day, and the Shaker exercise, which I found on the web and decided couldn't hurt to add too (I am calling it "neck sit-ups" in my head now since I realized how HARD it is for me right now to hold my beck uo for 1 minute, let alone do 30 1 second reps)--whcih should be done three times a day.

Then there is half an hour, 4 or 5 times a day, of just swallowing some liquid or other. Coffee in the am, soup and juice in the afternoon, hot chocolate at night. I can't do much else when I'm doing that ebcause it takes so damn much concentration and I still have the tendency to inhale things at times.

Then there's mouth care--tooth brushing at least 3 times a day--gargling with biotene mouthwash a few times a day and I am back to gargling with the magic mouthwash (but not swallowing it usually) to prevent more thrush.

And neck care: heating pad around the neck am and pm to keep the msucles loose and putting cream on the scar twice a day, and stretching my neck twice a day at the advice of the physical therapist.

THEN there is the time it takes to feed myself through the tube, including grinding up vitamins and washinbg them down, 7 cans, three glasses of fruit and veg juice, and pills. I bascially need four sitting a day of about 1/2 an hour each (by the time I get myself settled, grind up the pills, flush the tube at the end, etc.)

Just the feeding myself and swallowing stuff is 4 hours a day. the other exercises add easily another couple-three hours when you add up the time. And on top of that, I have at least 4 hours of physical therapy/therapy/couples counsleing every week, let alone if I go to the dentist, the ENT, the oncologist, the rbeast surgeon (all of whom I've seen in the last month). And my physical therapist wants me to see a chiropractor for a couple of times a week for a little while too. And since all of the exercises are spread out I have to CONSTANTly be interrupting whatever else I happen to be doing.

So we're talking about 6-8 hours/day to take care of myself. And I'm trying to work full time on top of that. My work schedule is incredibly flexible--I have usually around 4-5 hours of committee meetings every week and 4 office hours and other than that I can work whenever and whereever, thanks to teaching online and a laptop. But even though it's flexible, I still need to be putting in a minimum of 35 hours a week to stay caught up with grading and all the other stuff I do (committee work, etc.)

And I am having SERIOUS time management issues about all this (add to this that I've packed and unpacked everythiung in my study to move it to another room in our house at the request of my husband and am also trying to finish repainting/ fixing up a bathroom at home on the weekends). I feel like I have NO free time and I often find myself exhausted in the evening at around 9 pm thinking "I still have to do 2 more jaw strecthes, swlalow hot cocolate for 1/2 an hour, then feed myself 2 cans and sit up for half an hour after that with a heating pad around my neck"

And the thing is I feel well enough, it's easy to forget about doing all this stuff. But if I forget I may doom myself to the tube forever.

Has anyone else been here? How did you keep yourslef going? I am finding I have to write out a schedule for every minute of my day to stay o track with stuff. And I just hate how overloaded it all makes me feel. I'd like some time to just relax and enjoy things right about now!

Nelie