Saturday, August 18, 2012

Passing For Normal and Why No One Is

(Below, or on the side, is a photo of my G/J tube WTHOUT any extensions in them...which is how I prefer it during the day)

I've put a lot, A LOT, of work into making absolutely sure I don't have to wear the backpack containing my tube feedings in it all day.

I still cannot get my rate above 90cc/hour (3oz/hour) on my overnight tube feeds. Right now I am running them over 10 hours. With the exception of my friend's birthday earlier in the week, which I only ran them for 7 hours because since I felt so ill the LAST thing I wanted to do was plug in my extension to my MIC-KEY button and run feeds that already make me nauseous and occasionally sick.

I've been rather pleased with myself this past week, however. Since doing overnight feeds and not having to wear the backpack during the day, all I have to do is drink a Monster energy drink to make up for the lost energy re: caloric intake (missing almost 1000kcal/day right now) do get me going in the morning. It lasts all day (thank you Panex ginseng and B vitamin complex!), and the boy at the local Walgreens where I get my (obnoxiously large) energy drink each morning says he misses me the mornings when he "doesn't get to" scan my drink for me so I can say cheerily "Keep the change!", while I flounce out the door to begin my wild and crazy day.

I've been so wrapped up in not having to wear "the backpack" during the day that I am now only really realizing how weird I am behaving. Some might call this a "mixed episode", which is seen often in bipolar patients, especially those labeled "bipolar I" and have been ingesting large amounts of caffeine.

This was my yesterday:

1. Sleep until noon because I have been awake since 5 am two days ago

2. Natter on about the state of affairs of my bedroom, which is trashed, to my houseplant, who is also in my bedroom, basking in the noontime sun.

3. My caseworker comes at 12:30 and comments on how out of sorts I appear. I tell her it's because I haven't had any caffeine yet. She gives me "the look" and I explain that I have to have the caffeine now that I'm not getting all 2250kcal/day (2500kcal if you count my electrolyte drink I have to have each day). "The look" still does not go away. She suggests I at least run feeds at 90cc/hour x 18 hours to get everything in. I laugh. And then I cry. And then I giggle since I do not know where the tears came from. I am not sad at all. But now I am most certainly confused.

4. We go to the park. I want to walk. She says we can't walk because I look like I'm going to fall over. So we sit. We talk. It is lovely outside. She asks about the Broadway production I saw in St. Louis on Thursday (The Lion King at Fox theatre). I told her: "Fourth row seats!" and go no further than that and burst into tears again against my will. Again, I am not sad at all. If anything I am overly excited. She switches tracks and asks if the overnight feeds only are causing any problems in my opinion. I gawk at her. "No! See! No backpack! No extension tube! I look normal!"

5. It hits me "normal" is a fallacy and I, indeed, despite the fact I am not "hooked up" to my feeding pump, I am not behaving normally.

The worst of this is now I have a lot if decisions to make about what to do next. The fact is that a rate over 75cc/hour for me causes a lot of retching, some vomiting on occasion despite the continuous stomach drain I'm on overnight, and dumping. To correct some of my nutrition deficiencies from the last -- oh -- year, Dr. Moline (my new internal medicine doctor) put me on adult Cerovite (a prescription vitamin) in liquid form (I was on an OTC children's chewable, crushed, and put through the tube). 90cc/hour for 10 hours is bad enough. I couldn't imagine doing this for 18 hours.

The fact remains that getting all six boxes of formula in over 10-12 hours is probably unreasonable when getting in just under four boxes over 10 hours is causing so many issues. Still, is this just a passing phase? Is this something, if I just work hard enough, that I can conquer?

This line of thinking is probably familiar to you! Yes, you! with either an identified diagnosis of some sort or not. Maybe if you just worked harder you would get that raise and your boss would respect you more. Maybe if you watch your kids a little more closely they won't get into so much trouble at school. Maybe if we are totally devoted to our partner we will never quarrel, never have any issues, our life will be perfect with a storybook ending.

Maybe you all are as delusional as I can be ;)

I see this often in the lives of my friends and family. (Drinking and smoking to excess, eating nothing or eating everything, striving for more or begging for less, wanting and wanting and not receiving and grieving and becoming more and more bitter as the days pass on).

But the fact is that I can only be in charge of MY issues and what I'm currently dealing with.

1 comment:

  1. Sorry you are having such a rough time. But you are right,we all got our not so normal things going on and knowing that helps sometimes.

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