the pocket

Yesterday, all was right with the world. I was on cloud nine. I felt good, singing, dancing, being goofy. I felt like myself again! It was phenomenal.

It lasted about 4 - 6 hours, well at least the super-duper great part. The whole day was great. It is what Dr. Jemsek calls a “good pocket.” I call it freedom. This is my vacation week. No antibiotics this week. I repeat, NO antibiotics this week. The rub is that it takes about 5 days for many of these antibiotics to actually leave my system. Therefore, vacation week somehow morphs into a strange mixed bag of #1 - super-duper great, #2 - great, #3 - quiet desperation and #4 - horrific. In no specific order. Just reach in and - surprise - wake up and see which number I’ve pulled. Fun for the whole family.

Super-Duper Great Nite

#1 - This seems to happen on the Monday of vacation. When I’m in the pocket, the super-duper part, In my mind I'm jumping up and down, waving my arms. Dancing, laughing aloud and singing at the top of my lungs. I’m hyper and fun. I feel good about myself and the people around me. Nothing can get me down, not even the fact that I'm wheelchair bound. I say the things I always want to say, the stuff that I usually second guess myself into not saying. I am talkative, funny and bold. I call people I meet by their first names without being scared I’m wrong.  I am the absolute best form of myself.

Stickerpalooza - the best part of my day

#2 - This is usually right before #1. This was Monday morning this week- open my eyes with a smile on my face. I’m snuggled down in the bottom of the pocket, nice and cozy. It’s like the old days, when I felt good, when I smiled for no reason, when Charles and I were usually on the same page, when dinner wasn’t in liquid form every night. The kids barely annoy me, I’m patient and kind. I expect the best of people, rather than assuming the worst. Nothing really makes me mad, I’m laid back and more like I was in the old days before meds and pain ruled my days.
 

Are anyone else's children this hyper?

#3 - This is often my payment (totally worth it) for my phenomenal Monday. When I’m falling out, gripping the edge of the pocket with my tiny little fingers, struggling desperately to swing my leg back up into that pocket just for one more day. It is a quiet desperation, a grim acceptance of the fact that I’m just not quite strong enough yet to pull up this ball and chain of pills and infusions. It’s like my body is here, pain and balance worse for the wear, but my personality is gone. I don’t have the energy to meet new people, or to do much at all for that matter. I can still pull together a smile and fake laugh for friends. I’m Debbie Downer. Not fun to be around. My brain isn’t remembering well, concentration is out of the question.  I cry easier, longer, harder. I feel like Chicken Little, “the shy is falling! The sky is falling!” A hyper child in the same room as me grates on my nerves like nails on a chalkboard. This works well with a 3 and 7 year old.

Completely out of the pocket

#4 - When I’m really, really far out, I just couldn’t hold onto the edge of that pocket another second and I am falling into that dark deep hole that houses depression, anxiety and other scary monsters. I can barely raise my head off the pillow. I literally do not have the energy to speak above a whisper. My body feels like I fell out of a 3rd story window, it hurts to be touched. I don’t have the power to yell, get mad, frustrated or any other emotion. Crying is just tears rolling down my cheeks onto my pillow. Really not great.

(Note to self: find synonyms for “really” and “great” asap)

Vacation doesn’t sound quite as fun when deconstructed like that, eh? It’s only Tuesday and I’ve opened that mixed bag and already drawn all 4 numbers. Dr. Jemsek is looking for the time when the first two begin to string together a few days in a row without the last two showing up in between. So far, not happening, but the week’s not over yet!