Post #27: Behind the curtain (it's messy)



I don't know people who wear buttons, but this makes a point. Also, I distrust people with "hilarious" bumper stickers.

So apparently, Crohn's is considered one of them fancy "invisible" illnesses, like Lupus or Fibromyalgia (know right now that I am not comparing my Crohn's, or Crohn's in general, to either of these two diseases).

My AAC, thankfully, is on the inside (that would be gross otherwise). I was thinking about what I did today-a jaunt through the farmer's market, a trip to the thrift store, a stop at the grocery-and how to anyone walking by, I looked.....average.

What people didn't see, however, was the ruckus going on behind the scenes:

7:30: wake up. look at clock. try to muster enthusiasm for rising. still tired after full night's sleep. promise self waffles.
8:00: get up, stretch, yawn. beginning of cramps. contemplate laying in bed until have to go to the bathroom.
8:30: Checking email, eating waffles. monitoring colon. still tired.
9:00 first BM of the day. normal! would do small victory dance if not so exhausted.
10:00: must. not. take. nap. watch TV, try not to fall asleep.
11:00: must. not. take. nap. watch shows on DVR.
Noon: more rumblings down under. drink water. must. not. fall. asleep.
12:30: lunch. carefully consider the merits or 2 vs. 3 slices of spelt bread, as the difference could easily tip the scales between bowel regularity/explosion. decide to live on the wild side and have 3. remember to add protein, b/c without it I would be more tired. not that hungry or excited to eat but go through the motions.
1:00: craft time! weather is steamy, making me more tired. Try to focus on wire wrapping and fine motor skills. promise myself I just have to make ONE THING and then I can take a break.
2:30: made TWO things. feel dizzy and tired. having cramps? does this mean I have to stay in for the day? I made afternoon plans. consider crawling into bed and playing the sick card.
2:45: laying on carpet. feels good. beginning of cramps, but no action. must take shower. must not nap. promise myself that if I shower, I don't have to wear a real bra (sports bras 4ever).
2:47: still on the floor. very very tired.
2:50: I AM GOING TO SHOWER MOTHERFUCKERS.
2:55: In shower. hot water makes me tired. decide to go ahead with afternoon plans even though I want to get into bed and read (and take a nap).
3:15: all clean and ready to go. take orange juice in a to-go cup b/c the sugar will perk me up.
3:30: parked close to the market, near a bathroom. walking around farmer's market. I'm tired, don't really want to be here, but the distraction is nice. sample gluten free pumpkin bread. very bright. think jealous thoughts about the people lined up for salted caramel ice cream.
4: at thrift store. wandering the aisles. hard to keep focused. tired and thirsty. rumblings.
4:30: grocery store. decide to stay in car.
5: second BM of the day, also normal. small cheer.
5:05: MUST.NOT.TAKE.NAP
5:10: play online game. drink water. so drowsy.

This is an extremely abbreviated version of today, with the times all wrong, now that I look at it. It's tiring to even read it, much less live it. Everything takes two steps: the mental and the physical. The will to act and the act itself.

Like a stage production, my days can be separated by what happens on the stage and behind the scenes. On stage, I try to look normal, fit in. I try to listen to what people are telling me, to engage, to be funny. Like a professional, I try not to acknowledge the occasional sounds from behind the curtain. If the noises get too loud, I'll raise my voice so that my audience won't notice them.

Behind the scenes, chaos. An ongoing litany of concerns and rituals, worries and fears. What did I eat? Did I eat too much/too fast? Did I eat something new? What will happen? Was there enough protein? Was there too much fat? When was the last time I went to the bathroom? Where am I going? What am I doing? Where will the bathroom be? Is my cellphone charged? Do I have my Imodium just in case? How much time will I need to get ready? Should I take a nap? Should I make myself stay awake? Will I find something to eat at the restaurant?

And so on, etc.

It makes me think: what would happen if the curtain went up? What would happen if people could see the AAC beyond the facade? Would they still ask how I was feeling? Would they still say I "look great?" Would they ask, for the 10th time, why I am tired? Would they still be disappointed when I canceled or changed plans?

People have, in general, been understanding and kind. But I'm not sure they really have any idea about what's going on behind the scenes. And I'm not sure that I'd want them to have an all access pass to the show.