Friday, January 3, 2014

Butterfly dreams

This wasn't even planned.... today I put a tea bag into my favourite mug and it was like insta-blog:

I actually feel I could leave it at that - one picture worth a thousand words, but most people who know me will know I am more of a 'why use one word when ten will do' kind of person.

I first learned of the quote on the mug a few years ago, after my diagnosis of Lyme disease -  actually almost 6 years ago now.  Not long after that, my Dad's job took us from Florida to Pennsylvania where everyone knows what Lyme is, I found the best doctor in the world (I stand by that claim - in all possible ways)  and began my treatment.  The idea of a caterpillar thinking its life is over and then becoming a butterfly fit perfectly.  Perhaps things didn't exactly follow the expected path from there, but it's still an optimistic quote worth holding onto - something beautiful can come out of even the lowest points in life - but we have to work for them (just like the caterpillar builds its cocoon!).

Having dream on my teabag today seemed perfectly fitting.  It goes with the aspirations of finally becoming a butterfly (just to draw out the metaphor as much as I possibly can), but it reminds me that it's the most important thing to do.  Dreams, hope - it's what keeps people going.

I've had several doctors and therapists tell me that my shoulder will never be normal again. (Some more bluntly than others.)  I appreciate their honesty - they genuinely don't know, because they've never dealt with this combination before, so I would much rather they are honest than pretend they know all the answers.  (The ones who did that caused me far more harm, way back in the early stages.) Nobody knows how much use I'll get back in my right shoulder/arm/hand; or how much (or if) my pain will improve and how long that could take.  They have different guesses, but the conversations usually go something like this:

Dr: I'm sure if you get back 70% function you can live a normal life and you'll be happy with that
Me: But if I can work hard and get to 70%, surely I can just work hard for longer and get something better....?
Dr: Well.........
Me: *staring expectantly*
Dr: Sometimes it happens...... *trails off*

(Just for some perspective: my last evaluation, I was at 20% function - it took me 12 months to go from 15% to 20%.  I should have that evaluation done again this month. I think I've improved, but the last couple of times I've answered the questions, I feel better for the first 4 questions - yes, I can now turn on a tap 'with difficulty' and put on sunglasses 'with difficulty' instead of not at all... YES!!, I think, finally I'm not just circling 'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'......... then it moves on 'can you sleep on your affected side?'; 'can you reach up to the middle of your back/ undo your bra with your affected arm?'; 'can you reach a shelf at shoulder height with a straight arm?'; ' can you put a gallon of milk on a shelf at shoulder height with a straight arm?'; 'can you play tennis?' etc. etc. and it's back to  'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'............ I have to have improved a LITTLE....)

I learned in November 2012, after it took me 9 months to re-learn how to shrug my shoulder that I had done something none of my doctors knew whether to expect or not.  They didn't know if the neuromuscular connections were going to re-form after such a long period of detachment, and all the atrophy that goes with that.  But I worked damn hard on those shoulder shrugs, and as far as I am concerned, I can work damn hard on everything else too.... when I'm allowed...

I don't have unrealistic expectations (well..... maybe saying I know they're (slightly) unrealistic would be more accurate.... I do have expectations, I know they might not happen); I know if I do achieve certain things, it will be against the odds, and it will take a lot of hard work - and it won't happen any time soon.   I know that I can't even do the hard work until the nerves heal, which is estimated at 2(ish) years.  But it doesn't mean I will stop dreaming and stop trying and stop hoping as I do the tiny exercises I can do just now - which I think I am getting better at....

Definitely improving on my first attempts.... several weeks ago, my Scottish physio tried to get me to do a new exercise.  He demonstrated - stood in front of my, barely hunched over and swung his arms in a rhythm, into the middle, out to the side, crossing them in the middle, across the body. Ok, easy.  He went behind me to watch my scapular movement as I did the exercise.  I tried reeeeeeeeeeeeeeeeeeeeeeeaaaallllllllllyyyy hard to make my right arm swing.  Nothing. (This still surprises me.)  He walked in front of me again, showed me the exercise again. Ok, yup, I know.  Walked around me again to watch my scapulae. Go.  I tried.  Nothing.  The left one was just swinging kind of oddly, as my brain attempted to make the right one mimic it, but I obviously hadn't tried that since my surgery. 'New' movement: doesn't work. My brain couldn't make my arm do the movement - this is the weirdest feeling ever, I really struggle to describe it.  My physio, a powerful motivator and someone who will work you with an appropriate mix of compassion + professional coach (/ slave driver in my athletic past - he is way too nice to me these days!) stood in front of me again.  "What exactly is the problem here?" he asked.  I showed him my pitiful attempt to swing my arm (which incidentally was also pretty sore and kind of felt like my hanging, disconnected arm might just drop to the ground out of its socket if my skin wasn't there... although my pride was hurting more I think).  I don't think he knew whether to laugh or feel sorry for me. (He chuckled, halfheartedly - I think if there's such a thing as a sympathetic chuckle, that's what I got.)

He stood in front of me told me to stand up straight and mirror him.  Eventually, my arm got a bit of rhythm - albeit a little awkward.   Now hunch slightly, is that more painful? Yes, but I'm ok (as the room filled with white sparkles - I can ignore them, it's the black sparkles that mean STOP... generally physios and doctors disagree, but it works for me - I have to move SOMETHING).  Again, he stood in front of me and I watched him as I swung my arms, still awkwardly, but at least moving this time.  He went behind me and looked at my scapula. "Useless," he said, "it's not moving."


And back to the quote, with a final 'new' exercise, also a few weeks ago. Standing very close to, and facing the door with my palms against the door at a comfortable height (around level with my chest), shoulder width apart, he told me to move up and down in tiny movements - a couple of centimetres, no more.  He stood behind me, watching my scapulae. Try it with wider arms. Same.  Smaller movements. Arms back closer together. Wider again. Tiny movements. Make them smaller.  Arms together.  Arms wider.... "What exactly are you thinking about right now?" he asked me. "I'm imagining I'm a butterfly, my left scapula is a wing and my right one's trying to do the same thing," I spat out, frustrated and exasperated. "Good," he said, "keep thinking like that."

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