Crawling to the finish line

I am 3+ weeks away from my tube procedure and I probably used that title too soon because I don’t see things improving before then. For the record, I am perfectly happy to be absolutely wrong in my prediction. But following the general trajectory, I am dubious.

My life now revolves entirely around getting nutrition into me. And my body is struggling with it more and more. My body used to only go into shutdown mode after my first formula of the day. Now it happens for every meal, with the possible exception of my fifth formula of the day.

What that means is that every time I drink ~3 oz of formula, I have to go lay down and let my body deal with the influx. This down period used to last about 20 minutes, but lately it has been closer to an hour.

• Thus my days look like this:
  • Xena Malka wakes me up between 7 and 8am. If I am good, I get up with her, drink some supplement and go immediately back to bed.
  • Wake up again around 10am. Drink some more formula, go back to bed and snuggle with Dancer while I digest.
  • Wander out of the bedroom ~11:30 or noon. Try to catch up on my world for a about an hour until I feel compelled to drink some more formula.
  • Go back to bed and snuggle with Dancer.
  • At this point, it is usually around 3ish. This is probably my heighest point of functionality all day, and I usually let myself slack off a bit and get an hour to think about anything other than eating.
  • Somewhere around 5, I drink a few more ounces of supplement. I am usually ok to stay upright while my body digests, but not always.
  • 7ish, I drink my last portion of formula for the day. I am always almost able to stay out of bed with this meal.
  • 10:30 – Bed time so we can start it all over again the next day.

I can’t always get myself to get up at Xena Malka O’Clock. On those days, I get up between 10:30 and 11 and it is a race against the clock to get just 5 servings of formula in me (a grand total of 14oz, or ~560 calories) because if I drink formula too close to bedtime, it tends to make me feel crappier the following day, but I really can’t tolerate formula more frequently than every couple of hours. And even then, it can be pushing it a bit. So I rely on a clock to make sure that I am eating as often as I can, because left to my own devices, the intervals would be much longer.

If you recall, when my body goes into shutdown, digestion mode, I can’t read, I can’t listen to music, every ounce of my energy is going to my digestion. This is where I am so happy that we are living in a thriving neighborhood, because I can rely on outside sounds to keep what little brainspace I have occupied. Our bedroom window faces a shared airshaft with several other buildings. Within our shared airshaft we have an opera singer, a pianist and a clarinetist. I can occasionally hear street musicians too.

I haven’t been out of the house in over a week. Although next week I will have to leave the house to vote. It occurred to me to get an absentee ballot just one day past the deadline. But there are just some sacred duties that are worth exhausting oneself for, and with our democracy teetering on the edge of a cliff, it is not a duty that I intend to shirk.

It’s not that I don’t want to leave the house. It is just that I spend all of my daily spoons on getting whatever meager nutrition I can in me. And there just aren’t enough left in me for luxuries like showering, or going outside, or increasingly, keeping track of the days.

My BFF’s birthday was last Monday, but the week blurred by me and I only realized yesterday that it was Friday. And then it took me another half day to remember that the Monday in question was not the one coming up, but the one that passed. She has gracefully forgiven me, but the point that my life keeps getting increasingly smaller.

The good news amidst all of this is that after many, many months of looking and 3 therapists referring me to someone with more specific knowledge and expertise, I have found a therapist. She used to run an inpatient eating disorder clinic and has experience with not just eating disorders, but gastroparesis and tube feeding. She had not been taking new patients, but she was willing to have a conversation with me and apparently I was intriguing enough that she took me on as a patient. I don’t know if that is a good thing or a bad thing. What I have learned is that when a doctor finds your case intriguing, it doesn’t often bode well for your current state.