As a result of my parking lot acrobatics after last week’s physical therapy session I got kind of off track with blog writing. I wanted to write about physical therapy and how sobering it is. I wanted to reflect on how life lessons are usually thrust upon us in the most overtly rude manner possible, when you’re just going along minding your own business living life and feeling invincible.
I never got around to writing about physical therapy because I fell over backwards and suddenly had an even ruder awakening to write about related to gravity and its ever-increasing impact on my life in the last several years. Then I had to skip a PT session because of a meeting that got moved at the last minute that I couldn’t skip so I got discouraged thinking about how very little control I have over anything in life and oh my god, how does anyone have this disease and do anything else in life other than manage this freaking disease, and I really didn’t want to write about that…
So yeh. I went back to PT today. I may or may not have experienced post-traumatic stress as my mom drove up to the door of the rehabilitation hospital to drop me off. Oh, right. There’s a new twist.
My mom drove me to PT this morning.
As I contemplated getting myself back to PT after my dramatic fall last week I realized that if I’m to get the most out of this experience, I need to try and devote as much energy as possible to the work I do in the outpatient rehab room and not to getting myself to and from the outpatient rehab room. So I got dropped off at my appointment this morning at the door by my mom, just like I used to get dropped off at kindergarten. I almost felt like she should take my picture, just like we used to back in the day. But I didn’t push that idea because my outfit wasn’t nearly as cute as my childhood fashionista get ups were. Look! I have proof:
The thing is, I went to PT today feeling kind of defeated. The feeling got a bit more intense when the first person I saw once inside the door was the very same woman who had to help me get my ass off the asphalt the last time I was there.
She was sitting in the waiting area with the old man in the wheel chair that she obviously must care for. She looked up and recognized me right away. It must be the short, white, spiky hair? Or that thing where you never forget the face of the old woman you have to get back to her feet after performing a spectacular back flop in the parking lot a week ago. I smiled at her and thanked her profusely, again, for the fact that I wasn’t still rolling around out there. She laughed but I thought I saw a silent plea in her eyes that I please stay on my feet this time because she wasn’t up for the task again this morning. Somehow, I managed to stay on my feet.
Once I got to the outpatient therapy room, Melissa and I talked about the week since she’d seen me last. As we talked, I realized how much energy it takes me to do the smallest of things. Just puttering around my house while on the phone in one meeting or another feels like running a marathon. I’m doing this PT thing to start paying some attention to my physical body and what it needs to work better but it feels like a self-defeating exercise when it takes me more energy to even get into the room than I have for an entire day.
I walked into the outpatient physical therapy room convinced of my failure.
Since it’s been one month since I started seeing Melissa, our anniversary date if you will, we had to take stock of where we’ve been together. This took the form of various tests for which we’d set goals together at my first appointment. I barely remember this goal setting exercise because I was so freaked out by how pathetic my body was behaving when put to the PT baseline tests but luckily for me, Melissa had all the details in her handy computer.
I made Melissa tell me the actual numbers today as we worked through each test but I’d be a liar if I acted like I remember what numbers referred to which tests. I know we first tested my walking speed and wonder of wonders my walking speed went from a .48 to a .6 somethings per second. I can’t remember what the actual measures were but my improvement is right there in the numbers.
We did a sit, stand, walk to the mark, turn and come back test and I improved on that one too. I could stand from seated without using my hands this week. Melissa had to remind me that when we did the baseline tests I couldn’t do that one at all. That was my first week after finishing my anti-viral meds for the shingles so I wasn’t in the best of shape, even for me. So, ok, there’s another improvement.
We did some timed balance tests, too. I had to stand with my eyes closed for two minutes without faltering. I did that this week and I didn’t at my baseline. We did a spinning around in each direction thing that I improved on. And another test where I had to put one foot in front of the other and stand like that for 30 seconds. I held it without problem today.
I don’t remember what the exact measures for each test were but the time improvements were in the seconds, not the minutes. Barely seconds. Tenths of seconds even. Melissa looked at me with light in her eyes, so excited to convince me how well I was doing. Even though I did a back flop in the parking lot last week I was still improving. I had the tenths of seconds to prove it!
Tenths of seconds!?!? These are the increments of my success. I cannot fathom the smallness of them. I can’t get my head around feeling excited by tenths of seconds but now I’m in a place in my life where every tenth of a second counts. Some day, maybe I’ll be up to improving by full seconds or even minutes and that will be some huge progress but today is not that day.
Wow. I need to adjust my expectations. Again.
After the tests were in the books Melissa and I went through our range of exercises…two sets of ten on the leg lifts (back and both sides), the pelvic tilts, the bridges. We did many different stretches on that handy raised mat that I love so much. By the time I was done with my tests and my exercises my legs felt like two solid hunks of stone. I could barely lift my feet. Melissa insisted on walking me to the door of the hospital to make sure I made it to my mom’s car without injuring myself. I mean, who could blame her?
I introduced Melissa and my mom while I attempted to lift my legs into the car and finally gave up and lifted them with my damn arms. Before she closed the car door for me, Melissa looked into the car and told my mom, “She worked really hard today! She did an amazing job!” My mom said, “Oh that’s good news! She’s always so hard on herself.”
Oh dear.
Next week, I’m not going to be surprised if I get a print out of my test results to bring home with me, full of sunshine stickers and metallic stars that Melissa will give to my mom to hang on her refrigerator. It’s going to be awesome. I’m going to work on getting more tenths of seconds under my belt so I can have lots of metallic stars. Those will be my favorite.
I was sincerely grateful to get in my mom’s car right at the door once PT was over this morning without having to walk one more step to the parking lot. I did the right thing asking for a ride.
I did the right thing for my easily exhausted body but damn, my spotted brain needs to get with the program. Baby steps are measured in tenths of seconds and that’s going to have to be OK with me.
kimpromp2
June 22, 2018 9:44 pmI started reading this entry having been through several months of PT last year and was nodding along and even laughed when you got to the part about measuring improvement and started sobbing. This disease is so hard. It is so demeaning. AND I WILL NOT LET IT WIN. I will keep working. I will keep walking even if I have to use a cane. Even if it would be so much easier to just give in and exist.
bethnigro0212@gmail.com
June 22, 2018 10:34 pmIt’s always felt hard but the measuring how hard it is part really floored me. I’m sorry this made you sob. But you’ve inspired me. So you did that! MS and all. Thank you for that. ❤️
Rachel
June 23, 2018 6:10 amKudos for going back. For recognising that you need and asking for help. For getting up off the sofa. For interacting in the big cruel world outside. For sharing your achievement and acknowledging that forward is forward and improvements have been made. Keep on keeping on lovely x
bethnigro0212@gmail.com
June 23, 2018 9:18 amThanks for the kind words, Rachel. It is such a cruel world out there, isn’t it? So full of disguised obstacles. I will keep trying because the alternative is not acceptable to me. I guess that’s true for all of us, right? Wishing you all the best! ❤️
Maureen O'Brien
June 23, 2018 8:54 amI am sure your Mom was so thankful that you asked for the ride. She is probably just waiting for you to ask ANTHING. I know you are fiercely independent but she is there for you.
bethnigro0212@gmail.com
June 23, 2018 9:20 amYou are so right, Maureen! And to be honest, I love spending time with her so it’s a win win. But you know me well! Giving up any shred of my independence is so hard for me! But not in this case. This is about getting help so that I can remain independent so I have to keep reminding myself of that. I hope you and David are well! ❌⭕️
Debbie Schneider
June 23, 2018 2:07 pmThank you for expressing the comedy and the tragedy of this ridiculous disease. Humor is so important to get us through this. I wish I had read this before I went to PT yesterday. It started pouring rain as soon as I got there and I discovered it is impossible to carry an umbrella while you’re walking with a (very much hated) walker and also impossible to hurry. I came in looking like a drowned rat and the wife of another patient told me how much better I looked than the last time she saw me LOL. I can’t imagine how horrible I must’ve looked the last time! It’s laugh or cry daily, but whenever I can I choose to laugh.
bethnigro0212@gmail.com
June 23, 2018 6:51 pmOmg. Don’t even say it because it is rained the last three times I was at PT and you can’t carry an umbrella with trekking poles either. Thank god for my sweet 78-year-old momma for taking care of me. I would have been in the same boat. Hurrying is not an option in my life anymore. And laughing is the ONLY option. The alternative isn’t fun. ❤️ I’m sure you looked great. At least that’s what I always tell myself. 😂🤣😂
Fred Quick
June 23, 2018 8:54 pmMaribeth, everything around me is slowing down ever so steadily. The simplest of God given abilities like standing up straight, walking, even talking are becoming harder to remember. Working in the garage as I do everyday, I’ve even noticed how my vision is like looking at everything through a fish bowl. Know, for now, you are able too fulfill the needs of the body and with you and the help of your mom, your therapist we are rooting for you and hope to have you dancing in no time. The mariachi maybe?
bethnigro0212@gmail.com
June 23, 2018 10:47 pmThank goodness i have you rooting for me, Freddy! I may not be mariachi dancing any time soon but I’d sure be happy to be able to walk a little better? My goals are not lofty. Hang in there, Freddy. I am rooting for you too. 👍🏻