I have often been asked what my muscle weakness felt like in the beginning and what it is like now. Before my diagnosis I started to notice that when I washed my hair it was getting more and more difficult to keep my arms up to lather the soap. To even put my hair in a simple ponytail I had to operate fast. Luckily for me messy buns were/are in! The weakness continued to get worse and eventually I was not able to hold my son for an extended period of time, to hold my arms up on the steering wheel to drive down the road, to grab a can of soup off the shelf, and eventually to even lift the fork to my mouth at the dinner table. I will always distinctly remember having dinner at my in-laws and I was eating rice pilaf (a past favorite of mine) and I struggled to lift the fork to my mouth and then when I finally did I would end up choking because my throat muscles were failing to help me swallow. I think this was a defining moment for me because even though I was getting used to not being able to do as much physically, the thought of no longer being able to feed myself scared me. At night when I would lay in bed my body would hurt so badly and tingle constantly that I just wanted to be knocked out so I could sleep. Now although I have never ran a marathon, I have heard that after your first marathon your muscles go through some intense spasms. This is what I could think of to describe the feeling my body was going through on a daily basis. Walking up stairs was a joke. I have never climbed Everest but I have climbed my own personal Everests, ironically at my doctors office!
Eventually the medications set in and I slowly regained control of my muscles again. I no longer have to worry about making it on a walk around the block without stopping for a break. I can do most things that I used to be able to. I have noticed that I am much more weak than I used to be but that could also be from not being able to really use my muscles for so long. It is hard to build them back up but that is what this journey is all about. Finding a new and better me. To rebuild and renovate.