Besides all the wedding stuff that has been going on, I have still been trying to come to terms with my new tube feeding formula. I realized more and more that it's not the formula that I am having problems with, but more the fact that it is a 1.0 kcal formula (as opposed to the 1.5 that I had before), and I have to tube feed so much more volume and therefore longer as well. Besides those few months last year when I was on tube feeds only, I have always been a night time feeder. I was used to being able to eat some foods orally and top up my calorie intake during the night. Unfortunately over the past six months my GP has gotten worse, and I have been able to eat less orally. Thanks to the 1.5 formula I was still able to feed enough calories during the night, but I have started to feel worse during the day now, simply because I lack energy. Yes, I am getting enough calories and yes, my weight stays stable, but I was getting most of my calories during the night with the effect that I felt like I had no energy during the day.
So I have come to the decision that it is high time that I add day-time feedings to my schedule. I've tried all summer to up my oral intake - no luck there. I guess after almost two months I have to accept the fact that I just can't go by with being a sole night-time feeder any longer.
I started my day-time feedings this past Wednesday and so far they have been going very well. I am feeding in the afternoon now for a couple of hours. That way I am still able to have a liquid (oral) dinner, before I hook back up again before going to sleep. I am now back to feeding my regular amount ml-wise at night, I am able to sleep better again, as I don't constantly have to use the bathroom now, I am usually done feeding by 4.30 AM, and I get a few hours of sleep without tube-feeding. That's something I really enjoy - having a few hours without pumping food into me during the night.
And yes, I feel so much better now with day-time tube-feeds. Of course I feel so much fuller, because after all I am feeding into my somewhat dysfunctional stomach, but I have been trying to go for runs after I hook up in the afternoon and before I have dinner. Exercise always helps my stomach to get moving!
I guess it all still has to do with acceptance. I had no idea that I would have such a hard time to accept the fact that just doing night-time feedings wouldn't cut it any longer for me. I have been hooking up my afternoon feeds to my IV pole, but realized today that I have to bring out my backpack for those feeds. I hate being tied to the pole during the day.
I also have to try to get used to "outing" myself as a tubegirl, when I am out and about with my backpack. Without the NG-tube in my face, I have gotten used to being "incognito".