It takes 42 steps to walk from my bathroom to the kitchen.
It takes 77 steps to walk from my garage door to the mailbox and back
It takes 36 steps to walk from my back door to my car but only 16 to walk from my garage door to my car.
From the disabled parking spot to the front door of Piesanos restaurant it is 60 steps.
From the disabled parking spot to the cash register at the supermarket it is 100 steps.
From the disabled parking spot to the prayer garden it is 95 steps.
I can walk exactly 100 steps before I have to sit down and rest.
I started counting my steps one day when I thought that my own perception of how far something was, was hindering me from doing it. So I walked around my own house counting my steps until I had to sit down. It was 100 steps. I assumed to the mailbox and back it would be at least 200 steps. But nope. Only 77! I had stopped myself from walking to the mail box because in my mind I had made it an unattainable goal. Until one day I just did it!
I thought I could only drive to the supermarket. Until one day I decided to drive a little further. Then a little further. The only problem with driving is, when I get there I can’t walk very far because I’ve tired myself driving. YET, when my husband was out of town and my daughter had an allergic reaction, I drove further than I ever had to get her to the doctor and walked further than 100 steps to get her into the office. I paid a heavy price for weeks of weakness and pain due to that but I learned my limitations.
“That’s too far” turned into “ I think I can do that.” I just had to not let my mind limit my potential. I also had to realize my mind would allow me to push myself further than my body could handle. Boundaries, and limitations, and respect for my body, and keeping the faith helped me to understand my capabilities and inabilities.
My neighbor was out the other day walking and commented that she needed to get her “steps” in. She had one of those step counters. I kind of smiled on the inside. We both had our steps but mine were not the same as hers at all. I counted my steps earlier in the day for a completely different reason. Because of this muscle disease each step matters. My steps matter for different reasons than her steps. Not that her steps don’t matter. We each have our steps to reach our goal and to know our boundaries. Steps to recovery, steps to reach an exercise goal, steps we can take before we have to sit down. When she said this I was going around the block in my wheelchair. I had already gotten in MY steps for the day and was in cruise mode doing my photography.
Earlier, I had driven to Piesanos to pick up food for my daughter and me. I had promised her the night before that I’d get us food. It was not turning out to be a good day though. I stopped by the church on the way which added to my steps so I rested for awhile under the cross. I then went to get us our food. I open the car door and a little frog is in the door hinge still alive. My plan was to get into the restaurant and carry him and ask for a bag to put him in until I could get him back home and set him free. Well…as I was counting my steps (even though I know how many it takes it is reassuring to me) that little frog squiggled and wiggled his head out. I told the frog do not escape in this road!!!! I’m limping from too many steps. Just as I make it across the road that little frog did the longest leap a frog has ever made into a bush that I could not get him from RIGHT next to the road. So I said “ Mother FUCKER!” Much to a mother’s dismay who was walking past. How could I say, “ it was this frog I was trying to save!” Which my husband later pointed out that i was about to take into a restaurant anyway and who knows what would have happened. Along that way I got an intestinal bleed and blood started dripping down my leg. There was no way I could make it to the bathroom and then back to the car with our food. I always carry alcohol wipes so I wiped up my leg with the frog pee hand and picked up our food while making sure to not sit and rest or touch anything with that hand! I am a huge germ phobe because of my illness and my daughter I do NOT want to sick and would never expose anyone else to germs. I used my alcohol wipes and scoured my hands too much I’m sure. I lost count of my steps. Am walking back to the car and drop the food. Again saying FUCK because I am a cusser and it just comes right out. Call it the pent up anger of a stifled girl for 40 years. I make it to the car and have to rest a LONG time before getting home at which point I know I cannot walk the distance inside so I crawl carrying the food STILL mad as FUCK that that little frog wasn’t set free in my own yard. The idea that that little tree frog got stuck in a little bush next to a road makes me very upset even 3 days later! I brought the food in and lay on the floor for a long time. At that point I realize that I smell onions. Red onions are a huge trigger for me and PTSD. Miraculously my legs work as I stand up and frantically search for the onion smell. They are on the salad even though I asked for no onions. I try to scrape them off only for them to land on the floor and I almost break down. “Must get rid of onion smell. Can’t have onion smell. ” I’m frantically cleaning the floor when my daughter calls me and I tell her the onion situation. She says, God bless this child, “ Mom throw away the salad.” So I did. Then I looked at all of the food. Their it was (sorry for my there/their issues with spelling my brain can’t sort that out right now). My stomach had cramped for a week and I had barely eaten anything. I sat looking at all the food thinking of my old ways of anorexic controlling thoughts on all that food. I was so hungry. I was bleeding all over myself. My legs were shot. I just started eating. I ate and I ate and I ate. It was so satisfying. I then crawled the “steps” I would usually do to get to the bathroom but my legs could do no more steps. And I was not going to get blood on my scooter. I think it’s equally as hard to crawl and atrophied shoulders as it would be to walk but if my legs won’t walk they just won’t.
I flopped into the bathtub and then got into my bed. I’m pretty sure I met my steps for the day and more. I still went out later in my wheelchair to take photos because I honestly believe that a photo a day keeps all of the bad thoughts away! My daughter was so happy to get the food for lunch. Success. Made the daughter happy!
Just one day in the life of me.
*this is my 5th intestinal bleed. It stopped 2 days later.