Help, I’ve Fallen and I Can’t Get Up/ The Pitfalls of Recovering from Muscle Disease
- November 29, 2016
- Theresa Bertuzzi
So as my muscles and mobility improve I am discovering a few pitfalls that come with feeling better but not quite being back to normal and have found myself in a few awkward situations over the past few days. A few days ago I headed off to my son’s hockey game. It was freezing so I pulled on my giant parka and boots. When I am bundled up I do have some trouble with moving as the weight of the coat and boots and the awkwardness of the bulky clothes make me feel a little like a clumsy, stomping snowman. I got to hockey and proudly walked up the steps into the stands all by myself without my husband, Danny, having to help me. Good thing, since he was on the bench with the team and I would have had to flag down some of my hockey buddies to come and haul me up the steps. I did only get myself up one level as the boots were making me nervous but it was far enough to see and I was so happy! After the game I, of course, was chatting with everyone while I stomped down the steps and got distracted. My legs gave out on the way down and I almost went flying. We are talking arms pin wheeling, with my mouth open wide in a silent yell. I should have yelled out loud as one of my hockey friends was directly in front of me completely oblivious to the fact that I was teetering over her ready to shoot on top of her in a thunderous crunch at any second. Behind me, another hockey friend was helplessly yelling “whoooaaa” as she was watching the train wreck happening but was too far back to grab my coat or hood to hold me back and save everyone below. Luckily I saved it at the last second and stumbled my way down the rest of the stairs. I have no idea how I managed not to go falling down as, in my mind, I was doomed.
You would think that close calls like that would make me pay closer attention but why sweat the small stuff. I almost fall in front of people so often now that it doesn’t really bother me anymore. So at hockey last night I climbed my way up to the top of the stands to sit with my buddy Diane. This time I was smart enough to wear my running shoes knowing that I would have to make my way to the back of the stands and I was hoping to avoid another trip down the stairs. Our teams were playing against each other and we agreed that we would sit in the middle, in neutral territory, to battle it out and whack each other every time the other person’s team scored. Her team won! Frack!!! She is so going to brag about that for weeks now too! On my way to neutral territory there were a number of parents in the way so I had to get down a level to go around them. I was focusing on getting to my hockey buddies and completely forgot about the muscle issue and I did what I used to do to get down a level; I jumped. It was literally like one of those moments in a cartoon where the character runs off the edge of a cliff and hovers there. I knew exactly what I had done as soon as I was air born because the jump, which normally would be pretty graceful, was pathetic as I can’t jump anymore. Instead it became an awkward step off into mid-air. I could see my friend Diane with her eyes open wide sensing impending disaster and I braced myself for what would surely be me crumpling into a heap and rolling down into the stands as I was completely flying down out of control. But… I totally stuck the landing. I think my leg muscles were so tight in fear that they locked and saved me from falling. I was so surprised that I didn’t bounce the rest of the way down and I stood there for a good couple of seconds, teetering but still on my feet. I looked over at Diane who was now laughing at the look on my face and I yelled “Oh my god! Did you see that I almost completely wiped out!!!” Way to go Theresa, stick the landing and pull off a huge save and then start screaming and drawing attention to yourself letting everyone know just how close you came to killing yourself. When I got up into the stands there were congratulations all around from my group of friends who all lied and told me how graceful I looked. LOL They even pointed out that they wouldn’t have jumped down from there themselves. Not sure if that was a complement or them pointing out that it was probably a stupid move muscle disease or not.
I was also feeling so good yesterday that I headed out with a huge day of errands planned. First I had to visit my lawyer to take care of a bunch of paper work for the company and then I planned on hitting IKEA, the mall for shopping and groceries. Yup, that is so me, can barely move two days before, feel a little better and plan an entire day of walking and carrying things; I don’t believe in baby steps. After running a bunch of errands I started my shopping at IKEA and that is pretty much where the adventure came to a halt. Why do we have to have the biggest IKEA in the world??? Half way through the store I started to panic as I realized, holy moly, I am exhausted and I am not going to be able to get myself out of here. So I started trying to find short cuts to get out of there the fastest way possible. When I get tired like that my eyes start to blur a little and I was having trouble focusing on the signs so I just randomly picked holes in the walls to scoot through and found myself right back at the beginning again. OMG!!!! I sat myself on a couch and gave up for 15 minutes before trying again. It always surprises me how many people give you dirty looks when you do something like sit on a couch in a store or talk on your phone in a waiting room. The other day I had to finish a business meeting in the waiting room at the breast clinic. I made sure that I barely spoke and mostly listened, only adding a few words here and there quietly and one man was giving me looks to kill. Really??? I am a woman, sitting in a waiting room where most people have breast cancer. I am sheet white with a rash all around my eyes and nose, it was not a great day for me, and you could clearly see that I was sick. I wanted to shout at him that I spend about three to four hours every single day sitting in hospital waiting rooms and if I don’t work while I’m in there I won’t have time to get everything done in one day. Instead, I just smiled at him and then talked louder. Now we were discussing a pretty big deal on the phone so numbers in the hundreds of thousands of dollars were being discussed and that seemed to peak his interest so his dirty looks soon became interested ones and all was well. Perhaps he wasn’t mad at my talking at all but was just frustrated that I was being quiet about it and he really just wanted to be part of the business deal. The people at Ikea though who were firing me dirty looks clearly just thought that I was a lazy bump who had plopped myself on a couch to rest. I kind of was but I really had no choice in the matter, it was either that or sitting on the floor which as I learned shortly afterwards would have been a horribly big mistake.
After making my way out of IKEA the visit to the mall was clearly out of the question as I was now panting and my knees were shaking but I still had to pick up the groceries I needed to begin my Christmas baking that night so I headed to the grocery store. In the baking aisle I needed graham cracker crumbs and they were on the bottom shelf. I bent over to peer into the gaping hole to see the last two bags pushed all of the way to the back of the shelves. There was no way I was going to be able to get them. This was another one of those moments when, in my rush, I completely forgot about my limitations so I dropped down on my hands and knees and grabbed the bags of crumbs. Getting down for me is never really a problem but getting back up is a whole other story and I was now completely stuck on my hands and knees in the baking aisle at the grocery store. Holy Crap!!! I am not kidding; there was no way I was getting up. So I threw the bags into my cart and started to panic. The thoughts were spinning through my head, what the heck was I going to do. I tried to push myself up a few times when no one was looking and then whenever anyone came down the aisle I would start shuffling items around the bottom shelf like I was looking for something really interesting while praying that the other shoppers would just grab their crap and get the hell out of there. Although if they needed anything from the bottom shelf I had it completely covered for them. While waiting for the other people to leave I ran through my options. Do I call a friend and have them come and pick me up? I quickly ran through my head where everyone was at that moment and realized that there was no one available to come and get me. Too bad, because a desperate call from me stuck on the floor of the grocery store probably would have completely made their day and given them something to tease me about for days and days. My parents would have come but there is no way my dad could have lifted me and I would have just ended up pulling him down on the floor next to me and then there would have been two of us down there scanning the shelves and trying not to look to conspicuous. I then debated whether or not I should just crawl out of there like a dog. I figured I wouldn’t stop either; I would just crawl down the aisle, over to the entrance and right out the door. Where I would crawl to is beyond me as I still wouldn’t be able to get up, I would just be stuck outside on my hands and knees. I could ask for help but somehow that seemed more humiliating to me than crawling through the store like a dog, I have some mixed up ideas of what is and isn’t embarrassing. So finally I got really mad at myself and I was going to get my big butt up. When the coast was clear I started pushing and, groaning, shaking and sweating and managed to haul my behind up into the air where I was now stuck balanced precariously on my hands with my rear up in the air. At this point I could hear that people had entered the aisle behind me but I was not making it any farther for a few seconds and there was no way I was dropping back to my knees and starting over so I sat there for a good minute in this awkward position, feet splayed, butt in the air, head hanging down, leaning awkwardly forward on my hands with my eyes closed. Once I caught my breath I gave one last mighty push and got myself upright. My face had to have been beet red from both embarrassment and because the blood had now rushed to my face. I didn’t even turn around to see how many people had just watched this interesting display of awkwardness but grabbed my cart and scurried out of the aisle as fast as my feet would carry me and I didn’t stop until I was at the other end of the store. So I still have no idea who was standing there watching me but I know that they were there and the likelihood of it being someone I know is quite high as our neighbourhood is pretty small and I often know everyone at the grocery store. I am just hoping that no one took a video that will end up on social media or YouTube although I imagine the security video at the grocery store would probably go viral if anyone can get their hands on it.
So there it is. I guess feeling better will also hold its many pitfalls and adventures for me. Thanks so much for reading along and joining me on this crazy, broken journey.