Wheelchair, work and worry

I’m frustrated.

We had a house full this weekend. It was amazingly welcome and surprisingly trying all at once. All of our visitors are among my favorite people. They came ready to work, hug and pamper me. They were happy, excited and hungry to make my life easier.

Can’t beat that.


Unpacking meant figuring out where things will go. That was challenging for me because if I can’t see it from my bed I have NO CLUE where it is, or where it should go. That means there were questions – lots of questions – that I can’t answer. I watched them work and wanted to help. My sister tried to come up with ways I could help – bringing things to the bed for me to sort. But mostly there were questions and I was worried that I was letting them down or making things more complicated because I didn’t have answers.

My son's room is coming together.I’m told my son has a very large bedroom that is in great shape now. His clothes have been put away and the next batch that will fit him are now in drawers. I’m told our bedroom is taking shape, too, with the dresser full of our clothes and our personal items in the general areas they will go.

I’m told the bathroom is spacious and I haven’t heard any complaints about the water pressure or ventilation.

Everyone has said it is better than our old place in terms of space.

But to me it feels like the walls are closing in.

I can get into the kitchen and open the fridge, but I can’t reach a cup or plate. I can’t get my own water from the sink because I can’t reach to turn the faucet off and on without leaning dangerously forward on my chair. I can’t brush my teeth unless someone brings me a cup or bowl of water. I can’t get my chair into the downstairs half bath at all. (I haven’t looked in a mirror since surgery day.) I can’t get outside on my own either. Someone has to wheelie me over the threshold.

Sunday was my first time out of the house since our stroll in the scary chair. This one was much better and it was a great trip. Yummy food, and fun in the park with my friends, husband and son.

But I noticed something about myself. I’m usually the type to jump in. And yesterday, when my husband put the Little Guy into the baby swing for the first time, I stayed on the sidewalk in my chair. I looked at the rubber chips with concern and was scared to venture forward. They were having a wonderful time, watching my son’s face lite up.

His face made me try. I wheeled myself over the bits and got close enough to push his toes. He smiled at me, and giggled at the motion he was feeling. It was a tremendous feeling — the sun, breeze and the sounds of my son’s joy. Plus I pushed myself everywhere I wanted to go. My husband had my back on the curbs and the minor hills, but I got myself where I wanted to go. That was a great feeling, too.

Sunday made me ready for today, and starting to work from home.

The table was covered with stuff so I worked from the bed, until my dear friends got it cleared off this afternoon before they left for Iowa. My husband and I had dinner at the table and I set up shop to be ready for tomorrow.

It will work, but it’s a tight squeeze to get between the bed and the commode at the right angle I need to get to the table. It is so frustrating to try to maneuver Blue Sunshine. Sometimes the leg rests get caught up on things. Sometimes Hugo, my cat, doesn’t realize I have to pee as much as I do and decides not to get out of the way until I nearly run over his tail or toes. Sometimes I just get tired of negotiating my way and scream at the bed spread for getting caught on one of the chair’s screws as I move.

The last time I screamed, my mom just waited until I talked calmly. Some birthday evening for her – with me screaming colorfully about not being able to use my legs.

“It’s ok to scream. It’s normal to scream,” she said. “When you’re comfortable with it you’ll be done with it.”

I respect her opinion hugely. She knows chronic pain. Since 1993 she has dealt with the kind of pain that may never go away. She and I have been talking more – not on purpose, just stuff that slips out – about when she first got sick and how frustrating and scary it was.

She didn’t know what was wrong and wanted answered. I want to use my legs. This evening I was beyond frustrated about why I can’t use my legs. I know what I have to do to get better and I am committed to doing that. But I am having a hard time.

I’m anxious, too.

I breastfed the Little Guy for about two minutes on each side this evening. It took 36 hours for them to feel like they were about to leak. I hated to stop him, but only let him eat until they didn’t feel sore anymore. He was confused, and on the second side sat in a very awkward position. I felt like he was saying, “Yeah, mom, you wanna be weird about this? I can be weird about this, too.” Every time I feed him I think about how this could be the last time. I try to memorize the way his face looks, so content. The way he wraps his little fingers around the strap of my tank top. I wonder about our bond. About if he’ll be a Daddy’s Boy all the time soon.

And I’m anxious about meeting the endocrinologist, too. My followup appointment and bone density test are at the Med Center tomorrow afternoon. In the hospital this doctor caught me at a bad moment and made me cry, hard. It was the only time I cried in the hospital and mostly was due to waiting too long to take my pain meds.

My mind has been racing about my bones. Did this condition contribute to my separated pelvis? Was it there before I got pregnant or did it happen while I was pregnant? Is there anything I have done that made this worse? Or better? What can I do, aside from weening, to make sure I heal as much as possible?

My husband is coming with me so we can both here the answers.

We’ll go back Thursday to see Dr. Sojka, have the staples removed and find out what’s next.

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