A day in the life of me: steps

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.

17 thoughts on “A day in the life of me: steps

  1. This post hit home with me. And before I forget – I’m very much a Dory these days, I hope you’re feeling better! I don’t know my limitations, you’ve brought up something so interesting and so important. With Chiari, I can’t stand or walk for too long before I feel like I’m going to just fall! Since my decompression in 2013 my left leg has been numb, my foot even worse. If I look at the bright side though, at least it’s the left and not my right, as it gives me the ability to still drive. I try to only drive short distances though, since I get vertigo. But since I don’t know my walking limitations as you put it, I only sit down when my body is close to dropping like a fly, I feel hot, I start sweating and feel my face red! It’s the most horrible feeling to know you might fall in front of strangers that have no idea about your illness. It’s one of my fears, to fall in public. Great post, maybe I can count my steps one day to get to know my body a little more.

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    • It’s my left leg too!!!! Keep on swimming!!!!!!!
      It took advice from the comments and wrote a few post from the heart of my daily life.
      Sounds like you and I have a lot in common with our challenges. Thanks for commenting!

      Liked by 1 person

      • Lol great! Yes, just keep swimming! There’s no looking back. It amazes me to find people with the same challenges as me. I often don’t think or say things to my family as to not worry them or think they’ll think it’s ridiculous – all my symptoms. I’ve come to accept this new version of me – still hard on some days though. I’ve cried, have complained and said the “why me.” But find solace in knowing, I am not alone, in my pain and my challenges.

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      • I don’t tell my husband half of my symptoms! Sometimes he doesn’t even know about them until he reads my blog. I try to just power through the best I can but some days that is impossible and I break down with the pain and just can’t pull it off, the facades that things aren’t as they seem although my husband has pointed out many times that I don’t need to say a word because he can see my atrophied leg right in front of him!
        I’m really sorry to know that you cant be open and honest about your symptoms. I feel I can’t be either. I can be with my husband but never could be with anyone else and with my husband I just don’t want to worry him because I know he worries sick aboutme.
        You are definitely not alone though. I really do understand

        Liked by 1 person

      • Yes, it comes down to that exactly, I don’t want to worry him. He already comes with me to my doctors appointments and has to also sit through tests after tests. But to go in great detail as what how I feel, I feel it’s too much for me, let alone someone else who doesn’t experience them. It can really be a lonely place to be having to deal with chronic pain or any illness for that matter. I’m so happy you understand. Thank you!

        Liked by 1 person

  2. I’m going to look for more tangible ways of defining my limitations. Like counting steps. I get lost in my mind with the PTSD symptoms, but it manifests physically as well, and not just in comorb.. (I was just interrupted, my daughter called me to come see an injured dragonfly she just rescued from being trampled by the puppy, thought you’d appreciate that) .. comorbid conditions like fibromyalgia and dysautonomia. You’ve got me thinking.

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    • I LOVE that you shared that she saved a dragonfly!!!!
      I have not been diagnosed with dysautonomiaa but I know a lot about it because of my daughter and my doctor thought I had it becasue my heart rate is in the 150s much of the time but in my case I just wonder is that anxiety, is that ptsd stuff, is that my muscles overdoing and overworking my heart. I think everything is connected somehow. I already have pain due to the muscle disease but when I have a ptsd moment the pain is much worse. Everything affects everything. I’m trying to be more award. Even laying here now I was trying to relax my legs noticing they were not relaxed but tense and I didn’t even realize it.

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  3. You exude nothing but perseverance and strength. God bless you Bethany. I really hope to meet you in person and I know that if we lived by each other we would so be the best of friends. You really a courageous woman. Even more importantly, not selfish at all whatsoever! Just keep on swimming my friend 🙂

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