So I’ve been lost in a forest of food supplements, meal substitutes and liquid vitamins and minerals…thinking I had done plenty of research on liquid foods etc…but what I didn’t get was other people’s experience with tube food and how to apply it in a healthy responsible manner. Frankly, I am one impatient bitch about it. Incensed that I have to interrupt my day for 45 mins per feeding, I have been rushing them, regularly and then wondering why I get light headed after …and why my energy lags…There oughta be a manual ya know? Thankfully, my friend Kelly, an experienced iron woman competitor, saw that from my last post.
I am convinced that I’m just not asking the right questions to be able to manage my nutrition via the pegtube. I have invited my friend Catherine who is a nurse to be my advocate at my next Dr’s review at the ALS clinic. I wasn’t told to expect a huge dip in energy or focus as I transitioned to all liquid foods but mother of all that’s holy~ that’s what’s happening. I don’t know why I’m just continually annoyed that this happens, I guess I think people should tell you what to expect…is that too much? Is that so wrong?
I have avoided the iso-cal originally perscribed to me as it’s full of high-fructose corn syrup and a stunning selection of chemical additives WHICH made me nausseous as all getout just so you know. However I’ve replaced that with a variety of natural and man made nutritional drinks, from coconut water and fresh juiced veggies to high protien and perfomance nutritional aids as well as liquid supplements for minerals, vitamins etc. Whatever my super combo mumbo jumbo has done it hasn’t been effective in minimizing the impact of living on the tube… I just hadn’t expected this to be the thing that made me home bound. I’m not quite yet, but definitly side lined by long feedings…it’s an effect I tried to minimize by “feeding” as quickly as I can. But as I said, this only made me light headed and occassionaly nausseous and often weak.
I keep waiting for this experience to self correct. For my energy to return so I can engage in an activity for more than 45mins-1hr. before I need a nap. I have new food coming Monday, we’ll see if that makes a dent. If not the conversations we have here will have a decidedly different tone…but we can cross that bridge when it comes. For now I am thankful to have found a guide.