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 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

t minus 19 days

"Sometimes we have to just hunker down   ~   and get through it.  Keep on."

If all you can do is crawl, start crawling. 

 ~ Rumi  ~

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 ~

And January is gone...

The day after I wrote my last post, I had my first post-surgery appointment with my physio who specialises in strange scapular issues that nobody knows how to treat, patients nobody knows what to do with.  My surgeon in Kentucky recommended him 6 months after my first surgery and he has been an invaluable resource of information and knowledge for me, and also for my regular physio, as well as a caring professional whose kind and unassuming manner belies the accolades and achievements he holds (I stumbled across his CV online when I was looking for details to send to someone - it's pretty impressive).  He is always honest; I always feel he tells me what he knows and what he thinks; and since I like to know things, and understanding as much as I can about all things shoulder/injury-related is a huge part of how I have coped with this, I appreciate being treated that way.  


In saying all that, my appointment last week was tough!  In every way.  The upshot is that February has to be a month of pushing through.  All the stuff I wrote about gymnastics is going to have to come to the surface again (after 3 years of trying to learn to push it down; to listen to my body; and to understand pain is a way of your body communicating - that's on hold).  I need to get a 30 degree increase of active motion with my arm this month, or there is a good chance my surgery could be classed as a failure; my tissue might not stretch out; I might run the risk of things scarring down again.


That was a hard thing to hear.  Not as hard as the new assisted movements I have to do though.... 


Example - an arm held straight up in the air is 180 degrees; I'm currently aiming to get to about 160 degrees.  At the moment it is taking a lot of 'effort' (i.e. pushing, pulling, leaning) from my physios to get it there, (and possibly a little more effort from me not to wriggle out their grasp and run away) -  attempting it myself at the moment is just pathetic - I have no idea what the number is, I'll just stick with "not even close" and "pathetic"........ and  agony.

And I will now admit that I think I have lost all the stuff I wrote about only a few days ago. Or maybe, the language of gymnastics is just not the same as the language of... 'controlled torture' I think I'll call it. I guess I was never really tortured in the gym - hard work, pushing yourself to your max and working on something over and over and over again while fighting through sore, tired muscles isn't really the same as forcing yourself to lie/ sit still while someone forces your arm into a position where it feels like it will snap if it goes any further - "like rocks crashing into each other..... and you could just crush them"  I described - "that's ok, I'd expect that" he said and pushed a bit harder.  But we weren't finished there.  Once in that absolute maximum position, feeling (honestly) as if he could just snap, crack(le) and pop my bones, he said: "Now reach up. Higher. Harder. Push against me. Resist this. Push down. Push up. Resist. Push with your elbow. Push with your wrist.  Push out the way. Push up again. Don't let me move it."   


Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest.........

$%#&.

The idea (/ necessity) is to get my muscles working again.  Muscles that haven't been able to work properly for 43 months now.  The have to 'relearn' how to fire and how to work properly - and of course they are....... well, weak does't even describe it.  Useless is better.  Sometimes my arm still feels like a stick, hanging at the side of my body, but not properly connected.  It's an odd kind of sensation.  The point of working through the pain, to get the muscles to work goes with the theory that once the muscles work and are actually supporting my arm and balancing movements (i.e. multiple muscles are sharing the workload rather than just one or two muscles trying to compensate different movements), the pain *should* diminish. That's the plan, anyway.....

(It better be!)

And there's also self-inflicted torture - twice daily with my 'pulleys' that are fixed over my closet door, staring at me like an entirely innocuous nemesis. (Give me "sit in the splits while you watch TV" any day!) I can already say - 3 days in, I have not missed an exercise.  I may cry through it, I may feel - again literally, I could draw the lines on my body - the bands of tissue that are pulling on my ribs, and on my scapula and feel like I could pull them right out of position, or until they snap.  But I will never have anyone say to me: it didn't work because you didn't try hard enough; or: it didn't work because you couldn't fight through the pain.  I will never hear someone else say that, and I will never have a voice in my head saying that either.  Because so far, despite all the 'experiments' and failures and different exercises and different exercise programmes; I have done every single thing I have been told to do (this makes me a "compliant patient"), and I'm not going to stop now - something has to work.

Obviously, what I hope for, is to be told the surgery did work; it can be classed as a success.  That removing that scar tissue, and unsticking my humerus from my scapula (i.e. cutting away the scar tissue that was sticking the top of my upper arm bone to my shoulder blade  -  exactly what was happening) has made a difference.  The degree of difference remains to be seen; what pain, possible problems or other issues remain are still major unknowns; but right now, at this moment in time, the focus is on making sure this surgery has not been for nothing; that it will be helpful in some way.  That is what I am working towards, and that is why I will bite my gums or dig my nails into my skin until I bleed; I will grit my teeth, and I will ignore the watery eyes (it really bugs that closing your eyes does not stop tears); it is why I have already told my parents, my physio and his current interns that my eyes will water this month and they will just have to ignore that. And I will just have to ignore it all too.

So.......... February is set to be a tough month. I will need all the mental and physical energy I can muster, and hopefully I will work hard and see some progress.


 In order to have something else to focus on each day, even for 5 minutes, I'm going to try to make February a 'visual' month - just a picture, photo or image of some sort to sum up my day.  If I manage, it might be interesting to look back over it and see if it tells me a story.  Getting things 'out there' can be pretty cathartic, so hopefully with something else to think about, and to reflect on will be helpful. If not, I'll sleep and try again in March!

Looking ahead, this is how I feel:

Definitely 'fingers crossed' kind of a feeling

Success is going from failure to failure without losing enthusiasm

 ~ Winston Churchill ~

There's no such word as CAN'T in the gym....

Thinking about pain, physical therapy, surgery recovery, pain... again - it's hard not to think about it when you feel it 24/7, screaming at you above everything else; stealing your concentration and attention away from something thought ought to be infinitely more interesting and therefore effortlessly hold your focus; but the screaming from your body just never takes a break.  So….. I have been reading about pain; pain tolerance; pain threshold; pain scales.  Trying to learn about pain, and realising that as a chronic pain sufferer, I probably know just about as much as researchers know; from a different perspective, perhaps, but the point is I did not find any groundbreaking, life-saving solution to any of my problems.  Even trying to figure out what I should be doing - at what point is it good to push my body, but still let it heal? - doesn't have a simple answer.  So if nobody can tell me, how do I figure that out?  And how do I figure that out?

http://www.pinterest.com/gmun22/once-a-gymnast/

Finding the limit is the problem now...

 I'm genuinely beginning to think gymnastics - especially from a young age -  makes your brain form differently.  This is suspected (supported by a few studies) regarding learning a musical instrument; and research into bilingualism shows language learning definitely affects neural development.  I suspect starting gymnastics at a young age is a bit like learning a language.  If you learn a language before the age of ~7 years, your brain learns it as a first language - neural connections are formed differently.  I learned the language of gymnastics well before the age of 7.  Despite the fact I haven't trained or competed for 14 years in gymnastics, or 10 years in trampolining, those things don't leave you….. No matter how much you try!

http://www.pinterest.com/gmun22/once-a-gymnast/
(Typo not mine!)

  

The language of gymnastics [abbreviated]:

"There's no such word as can't in the gym"

"If you think you can't, you won't"

"Always end on a good one"

And things like this make perfect sense:

http://www.pinterest.com/gmun22/once-a-gymnast/

*"you're in the air"
Typo not mine... again!

Because that is how you get results: 

My last British Trios Finals 2001
(before I broke another bone & had to quit)

But now…...

"There's no such word as can't in the gym"

To physio:

"Yes, you can push my arm as far as you want... did I tell you my gum is bleeding because I'm biting on it?  Just saying…"

"Yes, I can do this - I can still see in front of me, it's only black behind me, so I'm fine."

http://www.pinterest.com/gmun22/once-a-gymnast/

"If you think you can't, you won't"

To physio:

"Yes, this is ok....... should I be feeling sick though?"

"Yes, it's going - how sore should it get before I stop you? It's beginning to sparkle now…"

http://www.pinterest.com/gmun22/once-a-gymnast/

"Always end on a good one"

To physio:

[Eyes closed, sweat dripping off me, breathing increased, heart booming, room spinning]: "But I didn't do the full set... I'm not finished...*Will this actually do more damage...? No? OK. Finish then."

*(Um, yeah I confess to doing this one on Wednesday - yesterday.  It was 'only' two more reps... out of a total of 5.... for a muscle that hasn't really worked that way for 43 months. I slept in the car on the way home.)

[Ditto]: "But that last one was terrible..... I'll just do one more." [Collapse on floor]

http://www.pinterest.com/gmun22/once-a-gymnast/

So apparently I have 'syncope without loss of consciousness' - that means fainting without actually appearing to faint.  This adds to the confusion - have I fainted?  Or not?
THEN WHAT DO I DO??!!

Lesson:

Physios do not count any of those as "cans". (Sometimes they shout at you, actually.  Nicely.)  'Trying' when it is sparkling or black behind you or you are seeing black dots; you can taste vomit, or blood; you are dripping with sweat after lifting (holding, really) a ONE pound weight; you can only do it if you close your eyes……..  do not count as 'trying' either.  They are generally regarded as doing too much and produce orders like "Stop. Now." or "Lie down….. Lie down NOW." or shouted to their interns - "get me a chair!"  and "get me water!"

In the gym, bleeding gums, spinning heads and feeling sick may be the norm; recovering from an injury is not the same as gymnastics. (Mantra: repeat ad infinitum.) 


Second Lesson 
[doctor/ physio attempting to enter my head]:

"If you worked really hard at training one day, you would take a rest day the next day.  This is like that."

"It's like anything: work a day, rest a day, work a day, rest a day…."

"If you were sore after training one night, you would take the next night off, wouldn't you?"

Umm……. I'm really trying, and I know what you're saying here…….. but I don't understand………..

Yup.  I think gymnastics skews your perspective on life.  It means we learn young how to work hard, develop great time management skills*; we are trained to demand perfection from ourselves - on top of a natural instinct; to never give up (and in our heads, we still think our bodies have the capabilities it had when we were teenagers).  Getting injured (severely) is not a good idea.  Physios and doctors - you will probably hate any ex-gymnast patients you have! (Also because we also know exactly how we like our ankle/ wrist/ knee/ elbow wrapped; what tape we want to use, and exactly where we want it...)

*Yes Mum, I know this does not apply to me right now....... I have good reasons! And I really do try!

Just for fun.... things that are not really 'normal' (apparently):
(All from: http://www.pinterest.com/gmun22/)

I'd kind of forgotten about this, but it didn't strike me as
abnormal until I read this on Pinterest.  Last year!

As do gymnasts!

I didn't realise this was weird until the first time we did a group project
at uni and everyone was kind of staring...

It's incredibly difficult to resist this.  Still.

                                     

This is not normal? I still don't understand.... it's natural!

A little nostalgia:

Yeah, see below!

What a feeling........!
(Yes, that's me.)

 And too true:

However, I also think - a little bit of that stubborn determination built in may just feel like it's saving you sometimes.

http://www.pinterest.com/gmun22/

‘The greater danger for most of us is

not that our aim is too high and we miss it,

but that it is too low and we reach it.’

~ Michelangelo  ~

That kaleidoscope...

After reading my last blog post, my mum said she thought my kaleidoscope of butterflies  description was a bit tame - did it really describe my pain?  The answer to that, which was her point, is a resounding NO.  And it wasn't what I meant - it's definitely not all unicorns and butterflies chucking up glitter and pooping rainbows while I lie (in between torture sessions.... and by that I mean physio and daily exercises.... and generally moving) and recuperate from surgery.  Nowhere close!  When she finds me lying on the floor (the sit before I crash logic), or doubled over in pain in some contortionist position, trying to put pressure on a painful area - "It feels like I need to hold my scapula in place" or "my rib has popped out, I'm just pressing against it"; it is easy for me to understand why any kind of symbolism conjuring up nice pretty happy butterflies does not seem adequate to her.  And it's not. It does not describe my pain at all.   In truth, I loved the words, the imagery it conjured up as I was trying to describe a fluttering sensation that occurs with the spasming I get frequently; but the colorful idea spoke to me regarding my pain - my pain is like a kaleidoscope.

The butterflies are a description I have used before to describe strange fasciculations I get - kind of like that weird twitchy feeling you occasionally get around your eye; - that's a fasciculation.   I get them in the muscles right up the side of my body, often immediately after severe pain, accompanying spasms; or sometimes as a sign it's about to begin.  It's as if there is a closed space and million butterflies, all fluttering their wings within my body. Sometimes you can actually see it (freaked my sister out once!) It's not exactly painful, it's a strange sensation, unpleasant mainly because it always accompanies severe pain.... Which - it goes without saying - is painful!

Thinking a bit more about it, the kaleidoscope is a perfect way to describe my pain.  I love kaleidoscopes.  I've always wanted one of those test-tube type ones with confetti stars suspended in some form of liquid, the ones you just tip up & down to watch the colours and shapes through the viewer. Like these:

http://www.moon-dog.com/oilwandscopes.htm

My pain is colourful and fluid - ever changing. It's proved impossible to understand and this has been one of the reasons it is so difficult to treat.  "It" - apparently it is quite common, after a certain point, to talk about the painful part of your body; or the pain itself in the third person.  I've read various forums, blogs and other stuff about it online, and also become aware of other patients I talk to at physio doing the same.  I've commented recently that 'chronic pain' - or even 'chronic injury', which feels more accurate for me; but medically it's 'chronic pain' - needs its own name.  It's not like breaking a bone and being back to normal in a few weeks; or like getting a migraine; ripping off a toenail; stubbing your big toe; falling out a tree; flying over the handlebars of a bike; tripping up a kerb... (yes, this is a list of personal experiences; enough to make my point I think) - some of those things hurt more than others, some do take longer to heal than others, but they all heal. Properly.  Afterwards - and during - they feel totally normal (just sore), still a part of your body, and you never suddenly realise you've started referring to your stubbed toe as Timothy*.  

*Not a personal experience

http://www.pinterest.com/gmun22

My physio in Scotland, before he retired last year, told me that I "felt different" every time he manually worked on me, and that didn't make sense to him.  In his wealth of experience in treating injuries, he didn't know what to do with that.  My scapular-expert physio (I'll start calling him 'M') here has said the same.  It's not logical - you get injured, you start to heal.  There may be hiccups along the way, little bumps or plateaus in the road, but ultimately there is a relatively steady upward slope of some sort.

'Normal representation of healing'

Mine looks more like this: 

Representation of my 'healing' journey

(Currently optimistic that my recent surgery has been highly beneficial; unfortunately I do
know I can plummet into the negative very quickly.... but I'm being an optimist right now...)

 At home, my physio treated me as I 'appeared' each week. He focused on doing what he could do to try to keep my pain levels as manageable ('bearable' is more accurate) as possible; to calm the 'angry nerves' and inflamed tissue  - because he had no guidance, no further diagnoses or investigations into what was happening; no feedback from any orthopaedic, nerve or musculo-skeletal specialists.  Although so much is still unknown, here I have a world-renowned physical therapist who specialises in chronic pain and crazy shoulder/ scapular issues; I have various specialist doctors, and a wonderful PCP who all know my case well, and my awesome physio who has been treating me, literally, from the day I fell.  And - amazingly! - they all talk to each other! Groundbreaking idea!  What a shame they don't do that at home.


When I was back in Scotland last year, I had virtually no other medical support and without my physio's treatment, I know I would have been in a far worse position than I was last July anyway.  To be honest I didn't actually realise how bad I was until I got here.  I knew I'd been struggling at home, but it wasn't until I saw my mum's face, and cried at the airport (not something I usually do); had those first few days of having food made for me; not having to do anything like get to a supermarket to get food; or drive myself to a doctor appointment that I realised exactly how bad things had become.  I was indeed, treading water.  When I went to see my physios here and both physical therapists' measurements and assessments of my shoulder were so awful, it really just fit with the rest of my life.  Except my shoulder was stuck together instead of falling apart, like the rest of me.

Treading Water

Back to the kaleidoscope.  I have previously described my pain as colours.  I am a visual thinker; I dream vividly in colour, and the different feelings and sensations I get do make me think of specific colours.  Thinking of a kaleidoscope turning, constantly changing into different shapes and patterns of different colours seems the perfect metaphor for my pain.  And just to be clear, I'm not thinking pretty flowers and butterflies - think more daggers and nails, live wires, meat cleavers and claw hammers all slipping and sliding unpredictably into different arrangements.  That probably gives a better illustration of my pain.

The kaleidoscope image also works when I think of my body being the slowly turning kaleidoscope, where my ribs, scapula, arm, hand, fingers, neck, vertebrae are constantly changing positions - contorting into interesting patterns with body parts all in the wrong place.  That is kind of the way it feels - ribs dislocating, scapula winging, head of humerus sticking out the front of my shoulder, superior angle of scapula looking like it could pierce my skin, twisted vertebrae, visible muscle spasms, fasciculations, shaking muscles….. new 'pain patterns' with each position.

http://www.pinterest.com/gmun22

So when I read kaleidoscope of butterflies and thought it was a beautiful expression; I also thought 'kaleidoscope of pain' - that's a good way to describe it! It came loaded with meaning for me.  Even more so, with a kaleidoscope, you have to constantly turn it, or move it in some way - the patterns are constantly changing. I think that is a good way to explain my pain; to attempt to visualise it - yet also the most difficult thing for someone to try to understand (including me).  It is forever shifting into different shapes and patterns without warning - I don't know what is coming next, but the patterns of pain are as bright and clear as the patterns created by a kaleidoscope.   Although they certainly don't feel as pretty.

http://www.pinterest.com/gmun22

“Words have no power to impress the mind without the exquisite horror of their reality.”

     ~ Edgar Allen Poe ~