Monday, February 23, 2015

t minus zero (if I were still counting)

I haven't been to sleep yet, but it's after midnight so it is officially 't minus 0 days' (if I'd kept counting).  Today I have my follow-up with both my surgeon, Dr G, and my specialist shoulder physio, M.  A quick glance back shows I haven't written for over a week (11 days to be exact) and I guess that I stopped counting at that point.  Things got complicated again and trying to sum them up in a picture seemed impossible.

With a week+ between then and now, I can discuss things more clearly now.  I felt like I was completely failing, and I did not want to give up. That weekend, I slept almost constantly.  I managed to wake up to eat, do my exercises,  chat with a friend on skype ……...and that was about it.  My entire weekend. I didn't even manage to leave my bedroom.  I didn't intend to keep falling back asleep, I wasn't having a 'lazy weekend' on purpose, I just couldn't stay awake.  A decade of insomnia seemed to have turned to narcolepsy.  It felt like my body was saying, "I've had enough. ZONK."  My pain was off the charts again, pushing myself through my exercises was feeling more and more like stubborn determination and not necessarily logical thought.

Eventually on the Monday I asked my physio the question I felt had been looming over me for a while, but had started to smother me that weekend: How do I know when I'm working through the pain to my benefit and when am I just pushing so hard I'm causing more damage?

There was no doubt in my mind that things did not feel good.  But I did not want to 'wimp out'; to give up because it hurt - if someone could tell me that yes, it was going to be this disabling, but it would produce results, I would continue to push through; but they couldn't.  My physio asked various questions - summary of answers:

  • Literally all I am doing is PT three times a week.  I haven't been anywhere, done anything at all since we started on this 'push'.
  • I'm not eating properly - either asleep to too sore 
  • My pain is so bad that it feels like my body can't cope with it in any way - it just shuts down and goes to sleep: 
    • in the car on the way home, 
    • on the sofa, 
    • (almost) at the dinner table, 
    • always when I go for what previously had been a rest/ lie down after physio on my bed 
    • sometimes I'd even fallen asleep while eating & resting.  
  • None of that was anywhere close to 'normal' even in my already messed up version of 'normal'.
It was made pretty clear that was not the goal here.  Yes, I have to do the exercises, I have to work on my range of motion (ROM) and maintain it at a decent level so there is no risk I will end up with my humerus stuck to my scapula again; but if working the muscles in the strained positions were causing such a resurgence in some crazy nerve symptoms, and producing that level of pain, we can work on maintaining the range of motion passively at the moment, and work on getting the muscles to fire at an even simpler level.  It turns out the 'simple' level we were working at is still too many steps ahead of what my body is capable of.  It's a bit like going back to the shoulder shrug  - I haven't been able to use certain muscles properly for a long period of time, so I have to start at the beginning; I have to go back to rebuilding neuromuscular connections and 'teach' my brain how the muscles work again.  There are still too many blurry lines between what is nerve-related and what is 'mechanical' or 'musculoskeletal'.  

It still feels like peeling back layers of an onion sometimes - as we talked, I remembered that this surgery was never supposed to 'fix' everything - it was to see if my ongoing problems were purely nerve issues (which it proved they were not) and to address any 'mechanical' issue the surgeon could address, while also 'clearing out' my shoulder capsule.  All the talk of 'pushing through' and 'making this work', and the fact that he had actually 'fixed' something had whisked me along, thinking I had to make my arm work from this.  A reminder that was never the plan was strangely comforting - I was trying so many things and felt like I was failing at them; but that was all part of the process.  Nobody knows what comes next for me - it is simply about trying to do my best with the way things are right now, in the hope that one thing will lead to another positive step.

I was nervous about even asking.  Not that anyone here has really given me reason to be nervous, but so much emphasis had been placed on achieving certain markers this month and I didn't want to look like I was giving up.  I don't give up on things. I thought long and hard about deciding I needed to change things before the month was up.  My PT agreed with me - he told me he sees the pain on my face when I do the exercises, he doesn't think I'm a wimp....! As it is, I don't feel like I've given up; I feel like I made a sensible decision - after the first day of changing the PT session, I managed to go with my mum for coffee afterwards & a wander round the mall - I did not fall asleep in the car when we left the clinic!  The following day, I woke up; as if my eyes had opened properly and a fog surrounding me had lifted.  I knew I had made the right decision - not the decision to give up; but the decision to change the programme again in a way that I will see more improvement and be working with my body, not constantly fighting against it. 

This seems to be a lesson stuck on repeat.  I appreciate my physios and doctors really don't know what to do about me and are trying their hardest to get me to a better place and I appreciate that so much.  At home I was told it was unlikely to get any better; well it HAS!!  Even now.  Especially considering my arm (head of humerus) is no longer stuck to my shoulder blade (glenoid)!   But I do feel that I am stuck on a merry-go-round where we 'calm things down' then we 'push through' then that fails miserably, so we 'calm things down' and I listen to my body again; then I see stuck; so we try a new thing to 'push through' - it IS trial and error, I get that, and I would much rather it was trial and error than being dismissed and told there is nothing wrong.  The difficulty is how much is causes me to question my body.  Why is this not working?  Is it me?  Am I being a complete wimp?  Should I be pushing this more?  And the most frustrating: why can't I get my body to do this?  Why can't I make it? - the answers to these from various sources seem to be - thankfully! - in my favour: no, you're not a wimp; yes, I can see you are trying; I can see the pain on your face as you try to push through; you are a 'compliant patient'.  

Gotta keep trying!

Even my dad did an impression of me; he'd come to pick me up from PT one day while we were measuring my ROM - [screwed up face, funny voice…] "Get it further, get it further, push it to 160, will it go?" with his arm 'up' in the air (yeah, mine probably looked like that).  Strangely, that impression made me feel a bit better.  My dad's not known for being the most observant person in the world(!) so for him to actually imitate my screwed up 'pain face'; 'pain voice' and determined moment meant that's what it actually looked like.  And in that one moment, of getting my physio to force my arm as far (beyond) where I could tolerate it, I reached the magic number: 160 degrees.  It might hurt like hell, but I have made some progress:

This is still passive movement mainly, as my left arm is doing all the work, 'rolling' the right arm into position - however it does show that my ROM has increased; although you can see the obvious asymmetry in the muscles & movements from some of the views. 
(And ugh, my flexibility has GONE!!)

(Yes, unfortunately, these HURT - but I have IMPROVED!)

Back to the 160 degrees forward extension - can I do it myself?  Hell no.  Nowhere close.  My muscles simply are not 'there' enough again.  We are starting way further back with them than we thought.  I can't tell if I'm moving the right muscles again - but I've been there before and I know that I made progress, so it's not quite as scary this time.  It's just trying to figure out how to 'teach' the brain it can use those muscles again and right now I am barely on the bottom rung of the ladder with that.  My best attempt at explaining it is to say to someone (who is not a gymnast): if I said to you "do a somersault", you know you can't.  You might have seen them a million times on TV or in real life; but you can't simply stand up and do a somersault.  That's about as close as I can get to explaining - I know I have these muscles, and I know what it looks like to raise my arm above my head, but I know what I can and can't do with them - just as you know you can't (or can) do a somersault. I know what I haven't got the foundation for yet; what I need to work on; which links in well with gymnastics analogies of training to do a somersault - even if you're a gymnast, you didn't just somersault one day.  You worked through progressions - that can take years - to get there.  Gymnastic analogies work really well with the regeneration of neuromuscular pathways (in my head anyway....!) because progression is always required.

Go for it! -
(If you're not a gymnast - this is not 'normal', this is superhuman gymnastics!)

While it seems silly to compare something as simple as putting my hand on my head with a somersault; each thing requires multiple muscles to move in sequence to achieve the physical goal.   I will get there.

So as far as reaching my 'goals' for today's appointments - I have, really, even though I wish it felt like more progress; but the big issue was so the surgery was not 'wasted'  -  no re-sticking my arm to scapula, so that's a pretty good thing!  My arm can be pushed to 160 degrees - yes, it is sore, but the fact it goes there without feeling as if it is pulling my scapula through my skin is the major point - it has not 're-scarred' and so for now, passive work will maintain that motion.  I wish I could do it myself, but it still proves the surgery was worthwhile and I have NOT let things slide backwards.

Moving forward there are still lots of things to think about; lots to figure out; and lots to keep working on.  And yet another lesson this month, one that I have 'learned' many times already, but one that is always good to remember:


 It can be difficult to keep this in mind when so many different exercise programmes are thrown at you.  It is easy to doubt yourself, to try to squash that voice inside your head that is screaming at you to stop.  There comes a time where you really have to listen to her and not force yourself through agonising exercises without seeing results - especially when other exercises are showing results.  Knowing where that elusive line is has never been easy - in fact I still don't know where it is!  But I have been reminded that my body is pretty in tune with itself and I have to respect that - because I can respect that while still working out ways to keep improving.

I'm just keeping my fingers crossed that I can walk away from both appointments later today feeling like my hard work has been worthwhile; that I can take something positive away from each appointment.

“Anyone who has never made a mistake has never tried anything new.”

~ Albert Einstein ~



  1. Gail, I did borrow your question from this blog post but then left comment on Meg's shoulder FB page. Too many choices of where to leave comments and I don't keep them straight -- probably due to persistent brain fog. I'm happy to hear of the success of your latest surgery. I hope it leads to better days with less significant impact.

    All the best to you,

    1. Heidi,
      Yes, so much crossover! You'll have gathered I didn't see this comment until now, but obviously I saw the fb one. I think it is mostly a good thing though - more places we can all share experiences and offer each other support. In the relatively short time I've been writing my blog (although it seems like an eternity when I think of the injury....), cyberspace and 'real life' seem to be merging much more. Social media enables us to meet people who share our experiences and I think it really helps to know there are others out there struggling with similar things, sharing their ways of coping and offering advice, suggestions, and true understanding. I've found great support with issues relating to my shoulder, and with Lyme disease, and I've seen others dealing with other major issues in their lives who find comfort in the shared experiences of strangers who become friends. Social media has its benefits!

      And I'm sure I'm not the first person who has ever asked that question! Did you receive a helpful answer?

      Thank you for your kind wishes, I wish the same for you. :-)