t minus 21 days

Well, I went to physio.  And not entirely under duress (unless you count my brain forcing my body out the door).  If I'm being entirely honest, which I intend to be this month, there is one image that overwhelmingly sums up today:

Definitely feel like I am working towards the impossible just now; so this quote seems entirely appropriate.  Really looking forward to the 'suddenly' bit.  He's a saint - he has to be right... right?!

Start by doing what’s necessary;

then do what’s possible;

and suddenly you are doing the impossible. 

~  Saint Francis of Assisi  ~

t minus 22 days

My actual appointments with my surgeon and specialist physio are on Feb 23rd.  So the countdown is on.

Today, I had a hot shower to warm my aching (burning, searing, tingling, piercing, throbbing, pulsating, fasciculating, miserable, spasming, angry, fiery) muscles today; then I did my exercises; then I climbed onto my bed with ice packs and a heated blanket and when my Dad appeared to ask something, I told him I was never moving again.  Ever.)

Until I go to physio tomorrow, possibly under duress.

Feeling like I'm off to a great start...

“Nothing is permanent.”

~ Buddha ~

Dance fairy

I think it's fair to say I spent more time asleep last week than I did awake.  Sometimes I just can't explain why, even in my own head - my body just takes command and I don't seem to have much control over it. It's usually when my Lyme symptoms flare up, my joints ache and my head begins to hurt - add that to everything related to my shoulder and I should probably be surprised I don't spend more weeks asleep!  Hopefully now with the really cold weather lifting (and finding another packet of antibiotics in the cupboard, after I thought I'd run out last week... oops...) I can wake myself up a bit more effectively!   I am now more than half way through my visit here, so this week - fuelled by energy drinks, caffeine, painkillers, and whatever else I can find to give me a boost, I plan to do more than just sleep!

I'm not exactly sure what, but I thought this little tea bag tag went perfectly with my 'dance fairy charm' and hopefully will subliminally inspire my brain to embrace consciousness and find some exciting stages to dance upon for the rest of my trip... metaphorically, of course.  My pirouettes are currently an exercise in 'letting go' in attempt to teach my brain to relax my muscles and loosen them up, since I can't stop the spinning and have to 'flop' at the end - it might be good for physiotherapy, but it's certainly not at any kind of performance level!

Here's to a (hopefully) much more exciting week than last week!

"Life is not about waiting for the storm to pass, it's about learning to dance in the rain."

    ~ Vivian Greene

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."

Awesome.

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."

Progress, inspiration, motivation, and smiles

This week has been full of ups and downs.  In amongst those ups and downs, I have made some pretty remarkable steps forward with my shoulder.  I have waited a week to write about it, because, honestly, I've made steps before and within a couple of days they disappear again.  These have stuck for a week, so I'm hoping it is ok to share them now.

Compared to what I used to do, as a gymnast, and compared to how I used to be at my very sickest (virtually house-bound and hardly able to walk), there are many comparisons to be made.  Focusing on the positive differences is great and motivational; focusing on the distance I still have to go always makes me realise what a huge challenge I have still to continue battling - but I do not believe it is insurmountable.  I believe there will still be rollercoaster days (and weeks) and these will continue to test me; but I am beginning to feel like I can win this fight.... even if it takes more time than I ever imagined.

My HUGE achievements this week have been that I manage to do what can only be described as a 'baby girly press up' - a press up on my knees, bending my elbows about 1cm for my press up.  It is still awkward to get into position (involves bouncing about on my left hand before I can place my right hand into position); my weight is not evenly distributed - but I am putting some weight through my right arm/hand -  a major achievement! I can do two sets of 5 'press ups'... dreaming of the days I could do 20 full press-ups with claps in between in about 20 seconds! Oh well... gotta start somewhere.  I can also hold a 'baby girly plank' position, and then I can also do scapular retractions in this position - two sets of 3! - but my physio is especially excited about this as it means my brain has really figured out how to make my 'new' muscles work.  That's a really big deal.

I have also now progressed from the ability to make my arm shake as I try to lift it to actually raising it about an inch off the floor while lying on my stomach. I do five of these.  My physio tells me it is not one set of five, but five sets of one, since I need to rest in between - so the aim is to get it to two twos and then two threes... baby steps, as it has been all along, but the baby steps are working.  Again, this exercise means my 'new' muscles are 'talking' to my brain again, as it isolates them - they are doing ALL the work here.  Another really big deal.

For months, doctors and physios have also been stressing to me how important it is to strengthen my core, and I simply haven't been able to sustain any core strength exercises because of the pain they cause.  I have literally felt my core muscles turning to mush! This week I've managed to do 20 sit ups (well, crunches really.... on a ball) every day - a whole two sets of 10.   Amazingly, this is actually enough for me to begin to feel my muscles toning up again - in fact, there is actually a visible difference in my tummy which was beginning to develop this little wobbly part for the first time in my life..... disaster averted! (Um, yeah, because THAT was my disaster in all this....)

So that's my daily exercise regime now, along with still some basic range-of-motion movements, just to continue with those and continue to teach my brain how the sequence of movements is supposed to work.  I can't believe how exhausted it makes me, and I do still sweat, but the sparkly lights do not appear (as long as I rest in between exercises) and the impending blackness in response to any effort from those muscles seems to have disappeared..... finally!

The pain is still there, and it is still a major factor but I have decided to see if my body is ready to push through it a little and build some strength, which should then support my muscles more, reducing the pain by increasing the strength.  It's the viscous circle I've been caught in all year, and my physio is very much stressing I have to take it VERY slowly (I am not allowed to try any more headstands....pillows, walls, or anything - no exceptions! Physio's orders. To be honest, it hurt a bit too much anyway, but I did elephant-lift my feet off the floor for a couple of seconds..... I'm viewing it as a positive sign ...) and all my (approved!) exercises are with very low reps, small sets and tiny increments.

I've been taking choline and inositol as a supplement for about 6 weeks now - that is supposed to improve nerve healing (kind of, it's complex - all related to acetylcholine production and pain receptors and generally neurobiology that goes a bit beyond my understanding), but I think it could be helping.

I have also now been having Feldenkrais treatments for a few weeks and I have felt a benefit from these too - I am still unable to really explain them (it's a very slow process, I will try to explain at some point, right now the focus is on visualisation to increase body awareness - I'm really not sure how it's doing anything, but my body reacts pretty strongly to it even though I feel like I lie for 30 minutes and concentrate on moving my eyes in different directions with them closed.  It's really rather weird, but I definitely think it is helping somehow).  Feldenkrais is also supposed to promote nerve healing and the sessions make me sleep - unfortunately during the day; this is not good for my nighttime insomnia, but it's still sleep and they say we heal while we sleep...    

I feel most of my pain is more specific now.  It's still pretty severe at times; my attempts to do anything and go anywhere are still battles to manage mt meds, and fight through the pain, ready to collapse in bed (with my ice machine) as soon as I get home; but even with that, all the crazy parasympathetic pain does feel like it has calmed down a bit more, not entirely, but it's taking a positive step in the right direction.  

In the meantime, I am going to continue to watch this video on Youtube several times a day for pure inspiration, motivation and smiles.  Watch and be amazed!  It's simply mindblowingly amazing!!!

And yes, I'm super jealous.... and probably going to become slightly addicted to this superstar, Damien Walter's YouTube page:

Maybe one day.....

“Dwell in possibility."

  ~ Emily Dickinson

Celebrating the shoulder shrug

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