Baby Steps

“It does not matter how slowly you go so long as you do not stop.”
– Confucius

“Baby step around the office … It works! … Baby step down the hall … Baby step onto the elevator … Baby step into the elevator… I’m *in* the elevator …. AAAAAH!”
– What About Bob?

Sometimes, I get so caught up in the negative side of recovery that I forget to focus on the positive. My therapist keeps telling me that 1% improvement is still improvement. It doesn’t mean I need to run a marathon. It means I need to see myself doing more bit by bit.

Did I wash the dishes, even if I was tired? Or did I even feel tired after washing them?
A year ago, I couldn’t stand at the kitchen counter for more than a minute.

Was I able to get dressed and head out the door for an appointment or errand by myself?
A year ago, my husband had to drive me and chaperone me because I was so easily exhausted, I wasn’t sure I could do it myself. I certainly couldn’t walk through a parking lot, into the facility, and to the waiting room all at once.

Am I able to stand in the shower and bathe myself?
After three trips on the ventilator, I couldn’t get into the tub by myself. I couldn’t lift my legs to get over the tub ledge. We had to get one of those benches with the seat that extended over the side of the tub so I could sit and scoot; even that took a lot of effort.

Did I put on makeup and jewelry, even if it was just a little, to try to look more like myself? Was I able to wear non-pajama style clothes like blue jeans? Did my shoes fit?
A year ago, I was too tired and sick to care much. Nothing made me look nice or feel nice, particularly after the ventilator. After the vent and the high steroids, I was simultaneously incredibly swollen and incredibly skinny. My face looked like I weighed 1000 lbs and the skin was stretched to its full capacity. My face was so swollen that it ached. Once the fluid had been drained (again, my skin was stretched to capacity–parts had split and leaked there was so much fluid at once point), all my fat had been moved to my abdomen so I looked pregnant with twig legs. I have never had twiggy legs. Not ever. But I did after my hospitalization and the brutalization of the steroids. Nothing fit except pajama pants and oversized tee shirts. For a while, my feet were so swollen I couldn’t wear anything but men’s flip flops.

Was I able to take the dog into the front yard, walk up and down our five porch steps, and even go halfway down the hill to collect eggs and back up again?
A year ago, I couldn’t handle steps and the hill terrified me. I didn’t collect eggs because walking up the hill would have put me miserably out of breath. Forget taking the dog on a walk or herding chickens.
I still haven’t taken my dog on a walk around the block–it scares me a little–but I think I’m nearly well enough to try.

Last weekend, I took myself to a pottery workshop (I’ve never sculpted with ceramics and was excited to try). I’ll say that, for a first attempt, it wasn’t awful, but I don’t know if I’ll keep the sculpture. But I did it.

They had a similar workshop back in March, and I was too sick to make it. My undiagnosed gastroparesis was flaring, and I was terrified I’d puke all over the pottery. We didn’t need that, not at all. So I stayed home, in my recliner, staring out the window and clutching a barf bag. It was a sucky way to spend a birthday.

But, just over a month later, I was able to go, and I don’t know that anyone knew I was sick. I parked in public parking and walked all the way to the shop. It was a five-minute walk, but I couldn’t have made that stroll before. I walked to a coffee shop afterwards and then back to my car. And you couldn’t tell I was in heart failure or that I had lupus or that I had nearly died.

It’s amazing the difference a diagnosis and proper treatment can make. In fact, the pottery workshop went so well, I’m thinking about taking my son to a Star Wars festival this weekend. I would not have DREAMED of that a year ago.

A year ago, I was in the hospital, waiting for a bronchoscopy to figure out what was wrong with my lungs. My lupus was raging. My hair was falling out. I could barely walk ten feet without being out of breath. In a couple of days, it will be the one-year anniversary of going on the ventilator for the first time.

I have a lot of anxiety about that. Lots of feelings. Bracing myself for the flashbacks.

But we are so, so far away from where we were a year ago.