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.

Leave it to a somellier to create a liquor analogy! It’s so accurate though! My existence is being distilled by my experience with ALS. There is lots of input, periods of silence and periods of noise and information and short concise communications coming out…

I first saw this phenomena while writing my Speechless Speeches. The way I was synsethizing a concept or packaging my point into an impactful image or phrase, but it first occurred with my language: there is less output as I lose energy. I am even leading a Master Class without talking! I pass out the outline and handouts and we all lead together. My client’s are amazing! They have all done programs before so they trust my work and the value it brings. I think they are all getting more value by having to take ownership of and deliver the classroom to each other. But I stray a bit.

The Master Plan is more of a practice than a destination. Like they say,”Before enlightenment: chop wood, carry water; after enlightenment: chop wood, carry water.”

It seems as though all of the extraneous is being cut away, and I am down to the basics of life…intake/”eat”…followed by output/ produce and waste. A complex machine performing a simple exchange. I am learning to create teams because I must. I have never felt that effective with small teams. Large ones no problem. Go figure. “MORE IS GREAT” used to be my motto…as I resisted the Meis van der Roe “Less is More” Philosophy, despite having attended IIT!

Tony Judt aptly wrote that having ALS was like living in an ever shrinking room…that you knew was going to crush you one day but you didn’t know when. I don’t have that experience as much as I percieve being distilled~ it’s the sudden lack of variety in my actions, from what I do to/where I go/ where I sit to how I sleep. I am present to how many times I go to the bathroom…I never noticed that before, is it more often with the tube feeding? Seems like it is but I’m not sure.

There is just so much I dont do anymore because it just takes too much…and I’m REALLY focused. I have a mission. It drives me and keeps my brain alert and cooking with gas. So all in all, Being distilled is a good thing. I am the essence of what is important to me.