Last week I saw one physiotherapist and two doctors who had not seen me for a few weeks. Every one of them was very positive and enthusiastic about my newfound (re-found?) ability to shrug my shoulder. "I think that's excellent" and "I'm so excited about this!" were a couple of the comments I received which led me to realise that this shoulder shrug is not just a shoulder shrug.
The last month has been a little better. I have been deliberately cautious with my exercises, taking the advice that I had not to do anything that was going to aggravate my pain. When I saw the physio at UPenn in September, his recommendation was to focus on calming the pain because I would never make progress functionally unless my pain was under control. Initially it felt a bit like I was letting the pain beat me. My shoulder felt tighter and I had a lot of burning pain in my hand (possibly from nerve compression). I felt that not increasing my exercises was a step backwards instead of going forward. At the same time I felt like listening to my body also made sense; it was like I had been fighting it for over a year, especially since my surgery, and now I really had to let it guide me. It took a few weeks to really get my head around this and I certainly didn't get instant results (given up on those!) but now I do feel like it is beginning to work.
I've also been tolerating more manual manipulation by taking Valium when I go to physio. It seems to be increasing my range of motion now and my scapula has gone from feeling solid and 'stuck' to feeling more like it is pulling against sticky toffee when I try to move it. It's really just more torture, but it does seem to be helping!
My pain is still high, but less aggressive and angry pain. It is more constant, steady, and just about controlled by my painkillers now rather than feeling like it is attacking me all the time. I have stuck with the very basic exercises - small movements, no pushing anything and taking a day off when I need it - and I am very slowly beginning to see results.
Such as shoulder shrugs… Last year after I fell I was completely unable to shrug my shoulder. Every medical person I saw would try to get me to do it and ask me why I wasn't doing it: was it too sore? Not with that movement. Was it too tight? Nope. Was something blocking it? Nope. No-one even considered that the muscles that did that job were no longer even there. (My surgeon says this is because there is a gap in the "medical encyclopaedia" and taps his head as he says that. The injury is so rare that most medical professionals have never encountered it. In fact, our friend who is a top neurologist, and who really helped me a lot this year, told me he had "never seen a scapula not move before".) I didn't even know I wasn't moving it unless I was looking in a mirror. I simply couldn't tell. After my surgery, my surgeon said that there was now a 'gap' in my brain - it didn't know how to do certain movements anymore because the muscles had been detached for so long.
Learning to do the movements again is strange. It seems like I should just be able to move the way I always have but every time I get a new exercise, or a new movement to try, it's like my brain is thinking really hard and concentrating on making the muscle move and it's just not working. When I was younger I loved Matilda by Roald Dahl and was convinced that if I tried hard enough I would also make objects move with my eyes. I concentrated really hard and tried and tried and tried, but it never worked(!) - it feels a little bit like that, although I think I have a better chance of achieving success this time…. For me, doing around 40 shoulder shrugs a day for months just to get a really basic movement back doesn't really feel like something to get super excited about. But seeing it from a few different perspectives this week has made me realise it's not just the shoulder shrugs, it's really what they represent.
It is a tiny movement, a tiny achievement, but it means that I have managed to get that movement back - to rebuild the neuromuscular connections to the extent that I can now do this movement (relatively) easily, quickly and sometimes even subconsciously now. I really hope that suggests I will manage to do that with all the other movements too. I know it's going to take a lot more time and lots of hard work, and I was told this week to expect a bumpy road ahead. So right now, I am going to enjoy feeling a little bit excited about my shoulder shrugs!!
"Success is falling nine times and getting up ten."
~ Jon Bon Jovi