"I know how the flowers felt"

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 11 days

"And those who were seen dancing were thought to be insane by those who could not hear the music."

~ Friedrich Nietzsche ~

t minus 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

t minus 13: Inspiration Required

Looking ahead towards my physio session tomorrow, all I can think about is how hard this is.  Not the exercises, the passive movements, the assisted movements; not the pain, the frustration that I can't make my body do more; not even suppressing the constant urge I have to throw things at any other patient (especially new ones!) doing 'advanced' shoulder exercises that I have been working towards for 3 bloody years! 

The hard bit is trying so f*****g hard and not making any significant progress; of feeling like things had been going "relatively ok" - as in during week one the room did not spin or go black; nobody had to come running towards me with a chair, a cup of water, or to catch me before I fell; and importantly, my physio did not make his 'what the hell is going on with your body?' face - that is definitely what would be termed 'relative progress'.  With those baselines, it really shouldn't be that difficult to make some 'relative improvements'.  So, I guess for a whole week, I did. 

I think it's fair to say this philosophy seemed to be working last week

Until Monday.  When I found my knees curling themselves into my chest and my left hand trying to 'soothe' my right shoulder by just touching it, unable to leave it alone; when I tried to 'hold up' my arm and it just flopped, as if lifeless, back into my physio's hand; when I had to give up on a couple of exercises for that reason; when I could trace the exact location of the long thoracic nerve the entire way down my physio's back to show him exactly where my pain was; when doing one exercise made it feel like that nerve was filling with icy cold water; when I had to keep checking the walls to make sure the sparkling wasn't turning into big black dots (only a couple); when I told the new intern that if I looked like I was just staring into space and not doing anything, it would probably be necessary to get a chair close to me asap, "Why?" he asked. "So I don't hit the floor." and explained my weird 'syncope without loss of consciousness' ('fainting without fainting'); when I realised mascara had been a ridiculously optimistic idea - sleepy half-shut eyes would have been better.  Oh, and when the 'what the hell is going on with your body?' face appeared far too often.

I guess 'relative improvement' is that I didn't need that chair, and the black dots didn't last long.  However, 'significant improvement' it is most definitely not. 

Because, like it or not body, brain says you are going back!

As I think about my next physio session - honestly wondering what surprises my body is going to throw at me next, I also wonder sometimes: how long can I do this for? 

But I remind myself of this quote, because it is the truest one I know:

Nobody can argue with that

At different times, my physios and doctors have acknowledged this difficulty - which quite honestly I think stops me from totally losing it, or feeling crazy.  When someone you are trusting with your health, and therefore your life, acknowledges how you feel - even shares in those feelings with you, it is one of the greatest comforts I think any health care professional can offer.

SURGEON

"Once something goes on this long, it becomes a mental challenge as much as a physical one.... for all of us." 

Said my surgeon, to both my physios, my mum and me - 8 months after my first surgery.  So that would be just over 26 months ago now.

Reckon the words "indomitable will" might sound good on a CV.  Proof? I have this blog...

PHYSIO

"Why have you not gone crazy yet?"

My specialist physio asked....... or rather half asked, I just filled in "crazy" as he struggled to search for a more appropriate word - around 18 months ago.

I sent him this.  He liked it.

DOCTOR

After another attempt to 'push through' failed and various discussions followed, I grumbled to my Doctor, 

"If I wasn't going to try hard, I think I would have thrown myself off a roof a long time ago."

"Probably something much higher."

He replied, as if we were having a perfectly normal conversation - sometimes it feels like his sense of humour keeps me sane. That would be about 20 months ago.

Because my awesome doctor is as crazy as I am, apparently

I think back over everything I've tried - I've had some little successes, like the incredibly significant shoulder shrug that held so much optimism and brought so much excitement to everyone - myself included, but that was 26 months ago too.   I really feel like I'm still waiting on the next 'shoulder shrug' - the next significant thing that lights the way with optimism again; that whispers quietly to me, "this is working".  And even more importantly, I believe it.

Inspiration is always good; actually sometimes, it's essential:

Not planning on it.......

"Success  and  failure.  We  think  of them  as  opposites,  but  they're  really not.  They're  companions - the  hero and  the  sidekick."

~ Laurence  Shames  ~

t minus 14 days

Monday:

Monday Me: "If I had working arms I would punch you."

My physio: "I would be delighted if you could punch me."

So.... it's not just me getting impatient and feeling frustrated!

Today my arm started to shake uncontrollably.  In an incredibly strange way - even held still, it was visibly shaking and felt not exactly sore (well it wasn't making my pain worse), but horribly unpleasant not to have any control over my own arm.  My fingers were numb with pins and needles ind it felt like I'd been whacked in the funny bone with a mallet - right at the beginning of the session.  "Make it stop! Make it stop! I can't control my arm!" (Drama queen?  Me? Never.  This was weird though.) 

 My physio started working up my arm - very calmly, massaging and trying to 'release' different nerves in my lower arm, elbow - nope, it just kept shaking uncontrollably.  I felt a surge of empathy for those with neurological disorders who deal with this frequently - I often feel like I can't 'control' a body part just now: hand, arm, shoulder - I can't make it lift something, or I try and involuntarily throw it instead (usually breakable things when that happens) and that's a strange feeling; also a feeling of no control over my muscles.  This was entirely different - I had absolutely no control and it was moving all on its own.  I was also feeling shaky and nauseated and using all my willpower not to hit the panic button in my head!

Finally, he reached my neck, started to twist my head and it slowed - eventually, with my head in what had to have been a contortionist position, it stopped.  He was trying to massage out any tightness in my neck - I was touching it, trying to pinpoint the spot - "here, feel it here - my vein seems to really be sticking out." (You know if you have really hot hands sometimes your veins stick up and you can feel them?  It was like that - a big vein right down my neck........ or so I thought.) "That's your vagus nerve." my physio told me - from what I've found so far on Google, it's not supposed to do that...

It actually calmed down and I very carefully went through movements and exercises gently today - no fight from me there, I have learned angry nerves are best left alone.  It does however offer a possible link for some of my weirder symptoms - but I'll leave that for another day, and some more research.

It remains to be seen whether this is a cumulative effect of trying to raise my arm - impinging on the thoracic outlet (just about the collar bone where nerves split to innervate the arm); aggravating my thoracic outlet syndrome, and the nerves I have that are wrapped in scar tissue; or whether there was an odd movement, something just slightly 'off' with either a way I moved, or one of the first couple of movements we did before it went crazy.

For now, (with hope) we chalked today up to a bad nerve pain day - and I'm really hoping it was -  just one bad day to leave behind me and move on from here.

"Never look back unless you are planning to go that way."

~ Henry David Thoreau ~

The weekend

Let's see.............Not much to say -  at the weekend, I was so exhausted, I just took this advice:

Did it do me any good? I really don't think so - Monday's physio appointment felt nothing short of disastrous.   Still, being unconscious usually feels better in that moment!

“Is all that we see or seem,

But a dream within a dream?"

~  Edgar Allan Poe  ~

t minus 17 days

One week down

"Success is dependent on effort."

~ Sophocles ~

t minus 18 days

I very much realise that there are people living in a far more hellish situation than I am; but right now, today, I am going through my own kind of hell.  My body is screaming at me again, but I am using every ounce of mental effort not to question that; to focus on the physical effort for now - persevering, determined to give this my best shot, to see if I can break through this pain barrier and create a return of 'normal' movement patterns.  But it is hard.  Today, my body is paying for being pushed to its limit at physio yesterday; but I have to keep at it and push it to its limit again today.  I genuinely don't know if it is "killing me or... making me stronger" but I have to work at it, give it time and effort before we will know.  So it does feel like working through my own, physical, hell - the pain is my hell and if working through it will get rid of it (even improve it slightly), right now, that is my incentive, my reason to keep going.

"If you're going through hell, keep going."

~ Winston Churchill ~

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 20 days

Today, I definitely should have had this:

Pinterest.com

I think I'm going to make one of these mugs and carry it around everywhere with me, and then on a bad day perhaps other people's expressions will make me smile.  :-)

Maybe a full range - wouldn't they look great on these amazing mugs from Fab ?

'Magic Hat' Mug & Lid from Fab.com ; drinks combos & text added by me.

' Mad Hatter's Tea Party'

Tough times don't last,

tough people do, remember?

 ~ Gregory Peck ~

(currently frequently paraphrased by my mum)

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 ~