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! -

https://www.pinterest.com/pin/566820303073377346/
STANDING DOUBLE-BACK
(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 ~

 

t minus 17 days

One week down

"Success is dependent on effort."

~ Sophocles ~

Determination

It's been an, um... interesting week.  I think it has been one of the most challenging weeks since my surgery.  I am optimistic and very pleased that my muscles are trying to work again, but I really didn't expect them to hurt this much while they're trying!  I realise this is another stage in the process... but nothing has been going very quickly... so it is a mental challenge to accept that the intense pain is a positive thing; to manage it appropriately and to try really hard not to let it beat me, emotionally.

It's amazing how draining the pain is.  When I get these 'episodes' of extreme pain, the muscle spasms very suddenly and severely, I sweat and feel really nauseous, the black dots and sparkly lights are back with a vengeance - I feel like my body's been through a traumatic event and just wants to sleep it off - it sounds so dramatic, but people keep telling me it is my body's response to severe pain, it is not something I can control.  It makes it so difficult to do anything else, to concentrate or even think about other things when the pain is all-consuming.  (The drugs don't really help with that either!)  Again, it's another thing I think I should be able to control more and to just power through and make myself do things... but then it's another thing that all my medical professionals explain to me is outwith my control...

However,  I have been shown how to try to minimise the reaction/ spasming.  So, today - when walking down stairs caused my rhomboid to spasm, I got myself into a position (kind of half lying my upper body on a table.. or worktop... or closest available surface) where the weight was taken off my shoulder and got my arm into a position where any strain or stretch on my rhomboids is relieved (scapula retracted), and my mum very very tentatively, and very very gently massaged the area, as my physio said.  It did help.  I think the heat, painkillers, muscle relaxant and anti-spasmodic drugs also really helped; but I also think I did manage to stop it turning into a full-blown, close-to-blacking-out, biting-the-pillow experience this time........... which is an improvement.

It's a bit frustrating realising that my muscles and brain seem to be communicating again but not knowing what is going to set off the cramping and spasms.  I had a chat with my physio yesterday about trying (STILL) to find that balance between doing enough to get a steady improvement without causing setbacks, and doing too much and exacerbating the pain again (more).  I am, as ever, determined to keep working at it.

Everyone seems VERY encouraged that this is happening.  My physio said to me yesterday, "You probably had times this year when you wondered if you were ever going to be able to use your right arm again - this means you definitely are."

(I think this means he had times this year when he wondered that too... So I think it's a good thing he's saying it now - when that worry has subsided!)

Honestly, it worried me how long things were going to take, and how much pain I was going to have for a long time - and I still don't know the answers to those questions.  But I really didn't entertain not getting the use of my arm back as an option.  I knew it was a concern, but I felt more determined to find something that would work; anything; that would let me use it - I never actually considered the rest of my life without the use of my arm, even though I knew doctors had talked about it.  It just wasn't an option for me.

This quote fits really well with that.  I find my blog really beneficial for positive re-enforcement - if I say it out loud, I am also saying it to myself, and hopefully also passing along some positive encouragement to others.  But I think the quiet determination inside has to be louder.

And I think there will be plenty of determination required to get me through the next few weeks.

People often say that motivation doesn't last.  Well, neither does bathing - that's why we recommend it daily.

   ~ Zig Ziglar

Wise words

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think."

          ~ Christopher Robin

                ~ Winnie-the-Pooh

(Image from Pintrest)

“Become who you are.”

   ~  Friedrich Nietzsche

Dance

I've had a really sore day today after all the pushing, pulling and testing my muscles went through yesterday so I've chosen what I think is a simple, but beautiful, inspirational song. It always makes me think about how tiny and insignificant we really are in this amazing world we live in - but we still get the chance to live one life and we should always choose to dance; to experience every opportunity that we get and to live life to the max, as much as we can.

"I Hope You Dance"

Lee Ann Womak

I hope you never lose your sense of wonder,

You get your fill to eat but always keep that hunger,

May you never take one single breath for granted,

GOD forbid love ever leave you empty handed,

I hope you still feel small when you stand beside the ocean,

Whenever one door closes I hope one more opens,

Promise me that you'll give faith a fighting chance,

And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,

Never settle for the path of least resistance

Livin' might mean takin' chances but they're worth takin',

Lovin' might be a mistake but it's worth makin',

Don't let some hell bent heart leave you bitter,

When you come close to sellin' out reconsider,

Give the heavens above more than just a passing glance,

And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you dance....I hope you dance.

(Time is a wheel in constant motion always rolling us along,

Tell me who wants to look back on their years and wonder where those years have gone.)

I hope you still feel small when you stand beside the ocean,

Whenever one door closes I hope one more opens,

Promise me that you'll give faith a fighting chance, 

And when you get the choice to sit it out or dance. 

Dance....I hope you dance. 

I hope you dance....I hope you dance. 

I hope you dance....I hope you dance.. 

(Time is a wheel in constant motion always rolling us along 

Tell me who wants to look back on their years and wonder where those years have gone)

 (Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

It's too hard to choose just one quote this song inspires, so I have three:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”    ~ Emily Dickinson

To live is the rarest thing in the world.  Most people exist, that is all.

  ~  Oscar Wilde

“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”

  ~ Mark Twain

EXPLORE ~ DREAM ~ DISCOVER ~ DANCE

BE AMAZED

BE AMAZING

One step at a time

Each night this month when I have sat down at my computer to write my blog I choose a song I like that fits my mood, or inspires me, or motivates me, or comforts me on that particular day.  Sometimes I've spent some time online, or on itunes (I hate itunes) paying close attention to lyrics, other times songs have just jumped out at me, but today I've actually had this song going through my head for half the day.  To be honest,  I had to look up who sings it and what the entire song is, but this one line "One step at a time" just kept playing in my head, on repeat, almost all day.  Perhaps my subconscious has better (pop) musical knowledge than the rest of my brain because the rest of the lyrics are a pretty perfect fit with my feelings today too.


Today I had my appointment with the specialist physio, Marty, who is consulting on my case.  He hasn't seen me since November so he gets a bit of perspective which can be a good thing -  it's hard to see improvements when I'm plodding along day by day; he sees me every few weeks, so the improvements are more noticeable to him.  Today he was pleased with some increased motion - more of my arm than my scapula - but my measurements have improved a bit; and with some "spontaneous movement" - i.e. that I can do naturally now, like my super shoulder shrugs, although in all respects he is still very clear that I have a long way to go (it's ok... I know that).  When he compares me today to how I was in September, he is optimistic.  There's a bit of me that feels kind of reassured when I see him because he does notice the improvement, measures it, compares it with the last visit and is calm and measured and honest about everything.  Each time he's been pleased with several things, although his main concern is still the level of pain I have constantly and everyone still thinks the solution is getting back natural movement, but I have to get there without overexacerbating the pain. (I'm not entirely sure that's a word, but everything exacerbates it, so I'm going with the hyperbolic neologism.)


I am however, kind of excited about trying a couple of new things... I'm not sure if excited is exactly the right word to use, but I feel like they could have the potential to be really helpful.


First, one of my little exercises I have been doing is a kind of semi-demi-port-de-bra-thing (my own, completely modified, ballet arms exercise for the non-dancers reading) and it seems to give me much more flowing, natural feeling movement than the other exercises I have. (Confession: I started doing it because I went to see the Nutcracker ballet before xmas and was trying to see what position I could get my arm into. Nothing much more than second position, but enough to play about with. And more than a few months ago.)  Within a small range, the movement has increased in fluidity pretty quickly, relative to other exercises.  It feels nice and flow-y, instead of like I'm trying to lift a dead weight, which is really how my arm feels with a lot of the other exercises, simple as they are.


Today, Marty said he felt I should try to get creative with my exercises.  He told me a story about an 80 year-old Chinese patient he had, she had suffered a bad shoulder fracture and her movement was terrible.  He was trying very hard to get her to do exercises but she was really struggling with the movement and then after 3 or 4 appointments she asked him if she could do Tai Chi, which she had practised for years.  He asked her to show him and said that "she turned from a caterpillar to a butterfly" right in front of him.  Her movement was fluid and smooth and completely different from attempting the 'normal' exercises.  He said this was only three years ago and she taught him the importance of muscle memory in a situation like that. (As an aside, I have so much respect for someone so highly qualified, experienced and esteemed in his profession who can say they are still learning.  For me it is the very definition of confidence versus arrogance. It's pretty rare, it seems.)


Watching me do a few "ballerina-type" moves, he said that I should try to think about what moves would work for me - obviously nothing extreme in relation to shoulder movement (which would be impossible anyway), but movement that feels natural to my body, rather than movement that is fighting it.  It makes sense to me.  I have already tried it with a couple of things so I think I'll have to get on YouTube and do some searching for some ballet fusion exercises, or something similar. 


Nothing about this has been normal - the extent of the injury in the first place was likely due to the flexibility of my shoulder; then all the damage combined made it quite unique; then the length of time added further complexity; and then I needed the incredibly rare surgery... so it really fits that everything about the recovery is going to be outside the box - and designed to work with my body - too.  My muscles really developed from age 3 to age 22 with dance and gymnastics moves, so it also makes sense to me that my muscles/ muscle memory will respond to that.  At least it might make it a bit interesting coming up with some different exercises... just what Angelo (my regular physio) wants from me: another challenge!


The other thing I am going to try is something called the Feldenkrais method which is 'somatic re-education' and works on the neuromuscular movements.  I stumbled across it a couple of days ago (very weirdly on a piano discussion forum in which a frozen scapula was mentioned), thought it sounded interesting and Marty has fully endorsed the idea.  I hope to start that in the next couple of weeks, so more info coming up when I learn more about it.


And I've to try to play the piano more too - right hand scales and finger exercises.  I tried to play last week and I was dreadful, plus, my newly ambidextrous brain, that has been reading music since I was 7 and piano music since I was 10, was trying very very hard to read the bass clef as the treble and I kept hitting the wrong notes.  It's really weird, I've never been strongly right-sided, although I do have a slight preference for my right hand but have always done some things left-handed (I put mascara on my left eye with my left hand and my right eye with my right hand... stuff like that) but my left hand has been my dominant hand for 18 months now (I can even use a knife AND scissors with it - big achievement! The world is created for right-handed people.... over 5 feet 2, I am fighting on many fronts right now.) Anyway, I am SO mixed up over left and right at the moment.  I get it wrong constantly.... Who wants to fMRI my brain??


So generally it was a good appointment because it definitely had some positive aspects, but I also completed the shoulder function questionnaire that I complete each visit and I'd improved from 15 points to 18 points (out of about 60) on functionality which kind of put things back into perspective.  So, I have some good things to focus on and some new things to try, but I think  "one step at a time" seems like the perfect (only!) perspective to have right now.

"One Step At A Time"

Jordin Sparks

Hurry up and wait

So close, but so far away

Everything that you've always dreamed of

Close enough for you to taste

But you just can't touch

You wanna show the world, but no one knows your name yet

Wonder when and where and how you're gonna make it

You know you can if you get the chance

In your face as the door keeps slamming

Now you're feeling more and more frustrated

And you're getting all kind of impatient waiting

[Chorus:]

We live and we learn to take

One step at a time

There's no need to rush

It's like learning to fly

Or falling in love

It's gonna happen when it's

Supposed to happen and we

Find the reasons why

One step at a time

You believe and you doubt

You're confused, you got it all figured out

Everything that you always wished for

Could be yours, should be yours, would be yours

If they only knew

You wanna show the world, but no one knows your name yet

Wonder when and where and how you're gonna make it

You know you can if you get the chance

In your face as the door keeps slamming

Now you're feeling more and more frustrated

And you're getting all kind of impatient waiting

[Chorus]

When you can't wait any longer

But there's no end in sight

when you need to find the strength

It's your faith that makes you stronger

The only way you get there

Is one step at a time

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

I've used this quote before, but not for a while and it is definitely the perfect quote for today, and for these lyrics:

"A journey of a thousand miles begins with a single step."

             ~ Lao Tzu

Gotta try try try......

Every day I time I write this blog I wish I could start it with something really positive - some amazing progress in my movement, or the magical disappearance of my pain... or the magical discovery of a drug or concoction of drugs (herbs, teas, whatever... I try them all) that has made my pain vanish (not only would  that be great for me right now, I reckon it might make me rich too...)  However, every time I sit (lie) down with my computer and start to type it always feels like my reflections are negative.

I hate to seem negative, and most of the time when anyone asks how I'm feeling, they rarely get the full, honest answer.  It seems so much like complaining.  Although writing feels more like reflecting; therapy... even if I still have to look forward to the time the reflections are more positive.

This week feels a bit like it's just been one of those weeks again.  My pain got worse on Tuesday night and really hasn't eased in that specific area since then.  When the pain increases, all I want to do is sleep; except (as yesterday's blog explains) I don't sleep at bedtime - I take all these crazy drugs that I HATE that I'm still taking, sometimes they work well, sometimes they just take the edge off for a short time and it's not enough for me to fall asleep; I end up topping up my ice machine at 4am; topping up the drugs at 6am and then eventually falling asleep.... all damn day.  I've tried the very logical - just make yourself wake up early and you'll go to sleep early.  Nope, doesn't work.  I've even tried - several weeks ago - just giving up on sleep.  One day, late last year, I went to physio on zero sleep, had a normal day and then still couldn't sleep until after 4am.  I think I said this before, my Doctor reckons I should just give in to my body's time zone and try living in Hawaii or Tahiti. Good plan.

In the meantime, trying to get comfortable in between (literally) a dozen - maybe more actually - pillows, hot water bottle and ice machine shouldn't be THIS HARD!! 

Every day, I always do my exercises - I do have a new one this week.  I have to try to strengthen my subscapularis (muscle under my scapula) by pulling on red tubing.  Doing this with my right arm makes me feel like I am getting really strong - I can pull! - I'm improving! - and then I do it with my left (just for balance) and my new-found illusion of strength quickly dissipates.  The tubing is not very difficult to stretch.   Anyway, I'm taking what I can get, I could barely tie my shoelaces a few months ago!  And the plan behind this is that it could... possibly, maybe, perhaps, theoretically, be the case that if my new pain is actually the scapula 'unsticking' and the pain is perhaps, maybe, possibly caused by the bone pulling on all the weak muscles, then it could... possibly, maybe, perhaps... be reduced by strengthening the subscapularis muscle which would hold it in place. This would be a good thing. Well, really, it's absolutely all relative, but in my case, right now, IF that is the case, it would mean what my physio has been trying to do for 3-4 months is actually working.

It was working before; in a gentle way, my measurements slowly increased at the end of last year; my arm movement (i.e. the head of the humerus was moving and not stuck) was better and very s - l - o - w - l - y, certain arm positions were achieved, mostly with assistance at the moment 

IF, however, this pain is coming from scapular winging, it means the scapula is no longer completely stuck down by scar tissue and I'm hoping that might mean more options, faster.

I see my specialist physio, Marty Kelly on Tuesday morning in Philadelphia so I will be all prepared with questions and hope that he will see some small improvements since November.

However, I tried to read up on "frozen scpaula" again today and found that on Google, Ask and AOL, my blog is the first hit in "frozen scapula".  So, that's kind of cool, but totally not helpful in my quest to find more information!   I've love to hear from anyone who stumbles across my blog while searching for their own information - I believe we all have useful things to share.

In the meantime, all I can do is TRY  - as can anyone, everyone, with everything we all have going on.  So I have selected Pink's song and I'm going to see if I can find the live dance from the AMAs to put below the lyrics.

Let's consider it a motivational PINK (who's just awesome anyway) song of the week.  This week is about TRYING.

"Try"

PINK

Where there is desire

There is gonna be a flame

Where there is a flame

Someone's bound to get burned

But just because it burns

Doesn't mean you're gonna die

You've gotta get up and try, and try, and try

Gotta get up and try, and try, and try

You gotta get up and try, and try, and try

  *        *        *        *        *        *

Ever worry that it might be ruined

And does it make you wanna cry?

When you're out there doing what you're doing

Are you just getting by?

Tell me are you just getting by, by, by

  *        *        *        *        *        *

Where there is desire

There is gonna be a flame

Where there is a flame

Someone's bound to get burned

But just because it burns

Doesn't mean you're gonna die

You've gotta get up and try, and try, and try

Gotta get up and try, and try, and try

You gotta get up and try, and try, and try

Gotta get up and try, and try, and try

Gotta get up and try, and try, and try

You gotta get up and try, and try, and try

Gotta get up and try, and try, and try

And for some amazing extra super motivational PINK :

(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)

Always true:

Success is dependent on effort

 ~ Sophpocles

The Journey

Today's thoughts are really taking up from where I left off yesterday, with the idea that life is all about the journey.  Everyone faces challenges in their lives and everyone deals with them differently, but ultimately our experiences, and how we deal with them, are what shape us and make us into the people we are.

Having conversations with people who have been extremely ill - at any age, but especially at a young age - is entirely different from having conversations with 'normal' people.  Normal people think you can make plans, write them in your diary, and they happen.  Normal people make life plans; their experiences give them confidence in their ability to make these plans happen and they have no reason to believe otherwise.  When it is difficult to make plans, because you have no idea if you will be able to keep those plans, it becomes very difficult to trust in the future at all; to believe that plans will happen.  In some ways, I feel like I have achieved some sort of weird zen - living in the moment, just taking each day as it comes and dealing with things that way.  But it's kind of difficult to explain, and it's definitely not viewed as 'normal'!

One of the hardest things about experiencing any kind of life disrupting illness or injury - something that throws your life so far off track that you might as well be racing around on another planet is trying to explain any part of that to your peers.  Friends can be the most empathetic, sympathetic, wonderfully supportive people; but the only people who truly understand it are people who have also experienced it.

In some cases, it is impossible for friends and family to genuinely understand and accept that these things are simply not something that can be controlled.  Friendships dissipate, people drift apart, causing hurt and feelings of rejection.  In other cases friendships become solidified by unbreakable bonds, held together by the glue of true acceptance, trust, loyalty... and a little bit of magic.

I consider myself very lucky to have a few of those very special people in my life.  And while the journey can be painful, the reward is wonderful.

Today I've decided to choose some lyrics from one of my very favourite songs, Drops of Jupiter by Train.  It's really a love song, but I think it has a bigger meaning that relates to a journey of self discovery.  In some ways, I feel like my journey through most of the last decade of my life has been like being catapulted into space, just experiencing an entirely different reality than I could ever have imagined.

Sometimes it feels like I just have a completely different perspective on everything - and I'm ok with that, it's what makes me who I am now.  I suppose, without any choice in the matter, I have, metaphorically, sailed through space... the universe... well, my universe... and realised that sometimes, having a completely different perspective on things just makes life a bit more interesting.

"Drops Of Jupiter"

Train

Now that she's back in the atmosphere

With drops of Jupiter in her hair, hey, hey

She acts like summer and walks like rain

Reminds me that there's time to change, hey, hey

Since the return from her stay on the moon

She listens like spring and she talks like June, hey, hey 

Tell me did you sail across the sun

Did you make it to the Milky Way to see the lights all faded

And that heaven is overrated 

Tell me, did you fall for a shooting star

One without a permanent scar

And did you miss me while you were looking for yourself out there 

Now that she's back from that soul vacation

Tracing her way through the constellation, hey, hey

She checks out Mozart while she does tae-bo

Reminds me that there's room to grow, hey, hey 

  *       *       *        *       *       *       *

Tell me did the wind sweep you off your feet

Did you finally get the chance to dance along the light of day

And head back to the Milky Way

And tell me, did Venus blow your mind

Was it everything you wanted to find

And did you miss me while you were looking for yourself out there 

  *       *       *       *       *       *       *

Tell me did the wind sweep you off your feet

Did you finally get the chance to dance along the light of day

And head back toward the Milky Way 

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

This song also reminds me of my first summer working at Camp Robindel, so not only does it have so much meaning for me, but it brings back such great memories and makes me think of many special friends.

“You must have chaos within you to give birth to a dancing star.”

~ Friedrich Nietzsche

Smile

After physio on Thursday I fell asleep, possibly due to pain, possibly with a migraine, and possibly because of the mix of drugs I had tried, but whatever the cause, I slept through Thursday's blog-post time and missed out on the lyrics of the day.

Yesterday, the continuing pain from Thursday's session at physio really didn't see me in much of a more conscious state and so I missed yesterday too.

As you may have gathered, Thursday's physio session was back to the experimenting.  The drugs definitely worked in terms of the actual movement and managing my exercises a bit better, but I haven't quite figured out what combination of drugs will help my body adequately cope with the after effects, so it's been a quiet, extra sore, couple of days.

With not much else to say other than to try to pull up some lyrics that are supposed to instill optimism  - the entire point of this little personal challenge - today I've decided on these:

"Smile"

Music by Charlie Chaplin
Words by Turner Parson
Sung by Nat King Cole

If you smile through your fear and sorrow

Smile and maybe tomorrow

You'll see the sun come shining through

For you

Light up your face with gladness

Hide every pain and sadness

Although a tear may be ever so near

Smile, what's the use of crying

You'll find that life is still worthwhile

If you just smile

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

A day without a laugh is a wasted day

~ Charlie Chaplin