Friday, February 28, 2014

Two Years Later...

February 28th 2012 - a date which will be forever etched on my body in the form of a 6 inch scar, and forever etched on my mind as The Day I Had My Surgery.

Scar Progress

Scar detail

To be honest, I'm very proud of my scar.  Initially, with my 18 staples (my first ever view of it - taken by my Mum just before the staples were removed so I could see it!) I felt it was a real battle wound - I felt like I had been cut up, drilled, and sewn, glued and stapled back together, so it seemed perfectly fitting.  However, very quickly (as the photos show), the wound healed very neatly.  Students at my physio's clinic declared it "looked like a plastic surgeon had done it".  I will admit that while I am absolutely delighted it looks as neat and almost invisible as it does now, I do wish the inside felt like it matched....!

But back to 2012...

Sometimes looking back, it seems a bit surreal.  I had multiple consultations with a couple of top specialists in Philadelphia, one of whom diagnosed me - a little tentatively, saying he had never seen this before, but he had heard of it - with detached rhomboids.  Actually, what he asked me in the appointment was "I assume you were born with rhomboid muscles?" 

Ummm, yes.

I didn't ever write about the process of my diagnosis.  Looking back now seems the right time to do so.  January 2012 was like a blurry trip through hell - an unknown, crazy month dominated by doctor appointments, diagnostic testing and excruciating pain.  It seems totally surreal when I think back.  Everything that happened in Kentucky, and after my surgery is incredibly vivid; but that January was dreadful.  

I think it was my pain really - it was so horrendous that when I first saw my Lyme Dr/ GP back in PA he took one look at me - he didn't even have to ASK -  and said "we have to get this pain dealt with".  That was the first time since the acute stage of my injury (in July 2011) I'd had any kind of pain relief. Yes, I'd been given various meds while in Edinburgh, but nothing was touching the pain - and nobody wanted to give me anything stronger. Later he told me that technically in medicine emergency surgery was 'life saving' but I was really just one step behind that.  I needed something done ASAP.  He was absolutely right.  Luckily I was finally on the right path.

Since August, I had been back in Edinburgh  at university working on my PhD (in Psycholinguistics), which honestly meant struggling into university for meetings and talks (on occasion being sent back home by my supervisor), and reading in bed - usually packed with ice packs and frozen vegetables, or hot water bottles and heat pads; struggling through an indescribable pain for which I had no relief.  I attended multiple medical appointments, both on the NHS (National Health Service) and private appointments and got nowhere.  Ultimately I ended up being told I would have to "learn to live with [my pain]", that I was "overly focused on pain" and "any damage will have healed by now".  Among other things. (More details in this post: Voice Within.)

This is what my right scapula looked like at that point in time:

Winging scapula (R)

As you can see, the right one is sticking out quite a bit more than the left one while both arms are in the same position against the wall in front of me.  What I know now is that where you can see the entire outline as it curves around and under is actually visible because there should be a muscle there.  Dr Kibler calls it a 'divot' - where the muscle has atrophied, and the 'hole' is visible.  You can also see it is in an entirely different position from the left one - with nothing to 'pull' it into place and hold it in the correct position in relation to my spine (which is also not in a good position here).  The scapula is a 'floating bone' held in place by 18 different muscles - when it is not in the right position, it really really hurts!!

Regardless of the unusual injury and diagnosis, even looking at this now (right now, for the first time in a long time), I can't BELIEVE that I saw so many doctors who told me there was nothing wrong with me! I simply do not understand why further investigation was not deemed necessary. 

I remember a Skype chat with my parents after an appointment with one specialist. It was a terrible appointment.  I was absolutely distraught - upset at being dismissed again, and at being badly treated.

On this particular Skype conversation, as we chatted through my sobbing, my Mum asked me: "Do you think there is something wrong?" 

I replied without hesitation, "Yes." I knew something was seriously wrong - I hadn't been able to use my right arm for nearly 5 months.  Even when I attempted small movements, I did not know if my shoulder was moving unless I was looking in a mirror.  It wasn't.

 "We'll get to the bottom of it somehow." she said.

I think I should send this, with my surgical report
 (and now my detailed nerve scans) to several doctors.

The other thing I remember from that chat is a ridiculous conversation with my Dad - probably trying to make me laugh (I think), and - one of those rare occasions - succeeding.

Dad: "It's a shame you don't smoke or we could send you some marijuana"

(Marijuana isn't legal in Pennsylvania, although I think perhaps it had just been legalised in New Jersey - with very strict medical restrictions - I have no idea what he was thinking... never mind international posting, customs etc.  And I'm guessing that's the only time in his life he has ever used the phrase "it's a shame you don't smoke". Ever.)

Despite the utter nonsensical comment in its entirety, my Mum and I both replied instantly with: "You don't have to smoke to use marijuana." 
(I'm really not sure why THAT was the part we BOTH saw necessary to point out first; there were many flaws in his 'plan'.... least of all being that I am very sure he has NO idea how he would get any!)

However, it was his next comment that has stayed with me and made me laugh...

Dad: "Oh yeah, you can bake it into brownies.  I saw that on Two and a Half Men."

My Dad's knowledge of soft drugs - brought to him entirely by Chuck Lore and Charlie Sheen.  

Oh well, he really did make us laugh.

Journey to Kentucky

Anyway.......... I was heading back across the Atlantic a few weeks later to spend Christmas and New Year with my parents.  I had work to do and permission from university to be away for 6 weeks.  When I got there, we decided I should go back and see the orthopaedist who had initially examined me when I fell, and followed up with me several times that past summer.  He is a really wonderful doctor, and a lovely person - he remembered me instantly, and was also instantly concerned about the way I moved my arm to shake his hand (I still hold my lower right arm with my left hand when shaking anyone's hand.  Some people really 'shake'; others kind of 'yank' your arm up and down - these actions HURT.  Absorbing any vibrations was a necessity!).  It took him about 5 minutes to point out multiple issues to my mum (who could see my back) about my scapula - its position and the fact it was not moving - 'scapular dyskinesia' (news to me - from an orthopaedic perspective).  

He recommended I saw their shoulder specialist; he told me he was very concerned at the level of pain I had (nobody accusing me of being "overly focused" on it there!) and recommended I had further nerve testing done, but by a neurologist (my  EMG in the summer was done by a physiatrist).

We have a family friend, another Dr K, - I will forever view him as 'saving' me - who is a top neurologist at a University of Pennsylvania hospital, specialising in neuromuscular issues. He saw me several times.  I may forever hold a grudge about the three EMGs he subjected me to (that's the torturous nerve test with the electrode-filled needles that are wiggled about in your muscles), although I do not think he could have been a better cheerleader throughout the tests!  At that point in time, I think it was suspected I had nerve damage and my muscle was paralysed because of that.  He later said to me (months after my surgery) he had "never seen a scapula not move like that".

He confirmed it did not seem to be neurological - very good news - but he didn't know what it was and wanted me to see another specialist, Dr W. I was told he was the 'top shoulder guy in Philly' by several people.  My own research showed that was supported by his research and publications in academic journals.  I was delighted - someone everyone thought would have the answers and could 'fix' me.  I saw him the following week - mid January.  At this point, I was still expecting to fly home to Edinburgh a couple of weeks later.

Dr W was the one who diagnosed the detached rhomboid muscles. Nobody had even mentioned rhomboids to me before then. Then he really dropped the bombshell: "There's pretty much one guy in the world who can fix that for you and he's in Lexington, Kentucky.  If I were you, I'd go see him in Lexington."  Mum and I were both in the appointment.  If our chins could have hit the floor cartoon-style, I think they would have.  He registered the shock;  answered our questions, recorded his notes while we were still in the room to give us time to think and ask any further questions; and he gave us the name of the surgeon in Kentucky.

I went to my physio in PA, Angelo, that week.  He had only good things to say about Dr W and he had been so sure he would have the answers and be able to fix me.  When we walked in, he asked how it went - was he going to fix me? "No. He says I should see someone in Kentucky."   He was about as stunned as we had been. "Kentucky? Who's in Kentucky?" he asked - apparently it is NOT normal, despite the size of the US, to be told to drive over 600 miles to get surgery.  To be honest, we were a little bit unclear on this at that point in time!

I pulled out a piece of paper. "A surgeon called Dr Kibler...?"

There was a 'knowing' look.  Clearly Angelo was familiar with the name Kibler (turns out anyone who knows anything about shoulders is - I did not know this at that time).  His response:  "If I want my shoulder fixed, I'm going to see Dr W; if he wants his shoulder fixed, he's going to Dr Kibler; if Dr Kibler wants his shoulder fixed, he's doing it himself." And that, apparently is the hierarchy of shoulder surgeons in the US.  At the time, I was still researching whether that really was just in the US and I could have the surgery somewhere in the UK, or whether it was indeed entirely true.  As the story continued, clearly, I discovered it was indeed entirely true - Dr Kibler had 'discovered' the injury and developed the surgery only a few years earlier. And, as I was told, he really did 'write the book on the scapula'.

And so after some liaising between doctors in Philly and in KY, we set off on our 650 mile journey/ adventure through Pennsylvania, Maryland, Virginia, over the mountains of West Virginia and into Kentucky.  

Tunnel through a Mountain PA
Welcome to West Virginia

Mountain Rd - as far as the eye can see
~2000ft high at some points!
Runway trucks!
This is a novelty to us Scots!

Welcome to Kentucky

I saw Dr K on Feb 27th 2012 for my initial consultation, which I reflected on yesterday. (Original blog post from 2012: 'Surgery Tomorrow' ;and I had my surgery on Feb 28th 2012 - original blog post: 'Ouch').

The surgery went well - it HURT like I had never imagined. So much for it can't possibly feel worse.... But surgically, it went well, I pretty much had exactly what Dr Kibler thought, and the repair was successful. 

Obviously, since then I have continued to add to pieces of the puzzle over the last two years, and have learned the degree of nerve damage I did sustain, I know now that there remains a lot that is still unknown.  Any further recovery is going to take a l-o-n-g time, even from now.

This image shows the muscles I had surgically repaired two years ago today:

This image is a pretty good image for showing exactly which muscles are where.  The big red muscle in the image is the trapezius (I think upper and lower - my lower trapezius was detached, this is still a big muscle).  On the right side of the image, you can see the middle and lower rhomboids.  These were the muscles that were detached from the medial (closest to the spine) border of my right scapula.  The lower trapezius muscle was "flapping" (surgeon's words) and the lower and middle rhomboids were "detached in multiple places".  Dr K thought the agonising 'pinging' sensations I had experienced several times since my fall were actually more of the rhomboids pinging off the bone, fibre by fibre, as tension on the remaining attached muscle increased.

I have my surgical report, which is really interesting to read, but the saddest sentence in it (for me) explains there were differences in tissue and scarring in the rhomboid muscles "indicating a failed healing response".  I don't think there is a sadder way of putting that. My body really did try.

When I came home to Scotland last September (2013) and went back to see my physio, R, (in Glasgow, where I am living now), one of the first things he said to me (as I presented him with a mountain of paperwork) was "I assume the trapezius was a partial detachment?". This was interesting, because Dr Kibler had explained to me that usually when he does the surgery, he can tug on that muscle at the spine of the scapula (also shown on the image) and feel some resistance lower down the medial border where the muscle is still attached; but with mine, there was complete detachment and it was "flapping".  So, the answer was no - it was completely detached. R said "you've blown my brains out".  He told me, and then my mum and dad, when we went back out from his consulting room, that he just couldn't even visualise how it was possible to do the damage I had done.  This is a guy my Dad considers the best physio he has ever worked with/ been treated by in his professional (soccer/ football) career.  Someone who treats top level athletes, dancers (his clinic is next to a major theatre in Glasgow) - and I've said before, every gymnastics injury I had.  It is truly an illustration of just how unusual and complex my injury was - but that should not justify the fact I was simply dismissed by multiple doctors.  

R frequently tells me that I still have a lot of damage; a long way to go; lots of work to do - and he works with my muscles gently and carefully, still careful to ensure I know 'pushing it' is not the way to go.  I would not trust any physio here, more than I do him, to treat my shoulder - and now that he has 'got his head around' just how crazy my body is, and has 'seen' in his head what my muscles/ tissue are like and what position they are in (different every time he sees me apparently), he treats me better than I imagine anyone else could - especially because he has treated me for various injuries my whole life.  But he is very clear: anyone who tells me they can 'fix this' (the nerve issues) doesn't know what they are talking about.  This is very much (still) one step at a time.  It's ok, I know that too.

(Like nerves)

My point in explaining all that is really that R is to the world of physiotherapy what Dr K is to the world of scapular surgery.  They are both absolute geniuses at what they do, with a wealth of experience, and I would estimate them to be close in age.  I think they would get on very well with each other.

It's interesting for me to have been so 'in' everything for two years and the fact that my progress has been SO slow is something I have had to accept - learned while on a physical and emotional rollercoaster.  But in that time, I have been learning with everyone else ("This might not be great for you, but we're learning lots." said Dr Kibler, the last time I saw him.) as time has s-l-o-w-l-y passed.  To see it from a fresh perspective, through R's eyes, and also to an extent from my new GP's point of view, I have been reminded of just how unusual some things are.  I feel like it has opened my eyes a bit (again) too.

I have become used to certain things - for example this week my muscles - for a reason entirely unknown to me - have been spasm-ing severely.  They have done this before, but not for a few months.  In the past week to ten days, my pecs are so tight, they are pulling on my top ribs and the head of my humerus, causing lumps to form; my biceps tendon also has palpable marble-sized lumps again; the superior angle of my scapula is very close to poking through the top of my shoulder, and I have one, maybe two, lower ribs at my back which seem to have dislocated again.  Today I had to call my doctor's surgery to make an appointment and request extra anti-spasmodics and explain I'd been taking more than I'd been prescribed (which is a lot less than 6-8 months ago - but of course, they don't know that) "because my muscles have been spasm-ing, I have lumps on my bones and they'd caused my ribs to dislocate....But that's ok, it happens."  I added as an afterthought. Yeah, if that doesn't sound crazy, I'm really not sure what it sounds like....!

My definition of the word 'normal' is definitely NOT 'normal' anymore.

I guess, if anything, looking back over the past two years really has been a rollercoaster.  It has been a learning curve - admittedly for everyone who has been involved in my treatment; and continues to be so.  Looking back specifically two years ago today to my surgery seems like such a small part of something so much bigger than I ever imagined it would be.  And ultimately, no matter how many people have (very kindly) told me they think I am 'brave' or 'an inspiration' or that they 'just couldn't do that' - none of that is true.... Ultimately, you do what you have to do; what anyone would do.  You take what life throws at you and you just keep going, hoping things will get better.

“That which does not kill us makes us stronger.”

       ~  Friedrich Nietzsche

Thursday, February 27, 2014

Looking Back

This time two years ago I met my surgeon, Dr Kibler, and shoulder therapist, Aaron Sciascia in Lexington, Kentucky for the first time.  At this appointment I was asked how many doctors I had seen, specifically about my shoulder, prior to seeing Dr K.  I counted 15 (not including multiple physiotherapists, nurses and other health professionals).  Apparently the average was 4.  My high number was partly explained by some duplication because I had initially fallen in the US and then travelled home to Scotland a few weeks later;  but mostly it was because the 13th doctor had been the one to diagnose me and refer me to Dr K.  The few before him (all in the US - on an intended 6 week visit which turned into a 21 month stay) had set me on the right path, narrowing down specifics with each specialist, and therefore pointing me towards a diagnosis; the few before those had just been downright dismissive (and since the saying goes "if you can't say anything nice, don't say anything at all", I'll try really really hard to stop with "dismissive".  There are many other words that come to mind.... They all apply to Dr number 14 as well - he was an, ummmm..... 'blip'.... which is really a nicer way of saying I wish my Dad had punched him. That was me trying to be nice.)

Anyway.... Dr K was the first person who TOLD me where my pain was instead of asking me; who TOLD me what made it worse; what made it better.  He knew WHERE the pain was and EXACTLY what movements increased my pain; what movements were impossible; and what (slightly) relieved it. He also conducted his entire examination far more thoroughly than any other doctor I had seen, yet with the least torture! He was the first doctor who was not completely puzzled, perplexed, or looked at me as if I were crazy, or perhaps had two heads, or even worse, that I thought I had an invisible second head nobody else could see.

After seven months of sheer FRUSTRATION, the relief was overwhelming.  I have been in touch with a few other patients too (the wonders of the internet) and each of them describes similar feelings.  I have not come across a single person, or page on the internet, saying anything negative about Dr K.  I think these are all a true credit to Dr K and his team, and the level of compassion, professionalism and respect they show each and every patient.  I think the very fact we drove 650 miles to see - literally - the only doctor in the world who could give me the use of my right arm back, and he firstly thanked us for coming to see him, sums him up perfectly.  A true Southern gentleman.

Reflecting on all of that makes looking back on that day such a positive memory.  It was filled with hope, understanding and promise.  It was the most positive thing to have happened since I had fallen, 8 months earlier.  

Of course, many things have happened since; other issues have come to light and other problems have had to be addressed.  It is difficult for me to truly separate these because they are inextricably linked when it comes to my overall health, pain, and physical function.  But when I can think about that one day in isolation it was such a positive day: it really was.  And even knowing everything I know now - every single piece of information that has challenged me (and my physios and doctors) since the surgery; every single thing that has made me cry with pain, with frustration; everything that has culminated in this big giant  "I DON'T KNOW", regarding my life, still doesn't take away ANYTHING from that day.   Ultimately without Dr K, without his surgery, and without that day - that week really - I would have no potential for getting my right arm back; I would still be in massive amounts of pain - maybe even worse than I have now (although see the picture below for my true feelings on that one).  

That appointment DID give me hope; something that was beginning to elude me.  

In that initial appointment, Dr K asked me to rate me pain on a scale of 1-10.  Most people with 'chronic' (technically anything lasting 3 months or longer) HATE this question.

For me, it's always been difficult to understand the question should be subjective - as people keep explaining to me.  It isn't necessarily the worst pain in the world, it is how you feel ON THAT DAY, or sometimes more generally with THAT injury.  It always feels like an exaggeration to say anything above an 8, but it genuinely impacts my ability to function - in every way; it makes me cry - for no other reason than it hurts.  Sometimes, when I have severe pain and find myself on my knees, clutching at my arm and realise my cheeks are burning and wet with tears, I ask myself if I am crying because I am frustrated, or even having a bad day and feeling a bit sorry for myself (which, yes, happens sometimes); but when I am attacked with the overwhelming, bring-me-to-my-knees type of pain, the only thought in my head is OUCH.  I am not thinking of anything else (it must be the only time that ever happens) but how painful it is.  I am still quite sure there are other pains in the world that are worse than mine; but having 'learned' how pain is supposed to be assessed, those 'attacks' make my pain - in that moment, at its worst - a 10.

I have found this to be the most useful pain assessment chart (I think clicking should make it larger, otherwise the original image can be found at the link on the caption):


I was always inclined to imagine the worst pain I possibly could (as per previous blogs) and then try to fit my pain in there somewhere.  This chart's descriptions - for example 'bedrest required' helped me to fit it into a more subjective context.

So when Dr K asked me how I would rate my pain, my exact words were:

"I don't want to sound like a drama queen, but sometimes it really is a 10"

He understood.  And he said the best thing I could possibly have heard, and never expected.  He told me I was "tough".  I told him (crying - really tough!) that I used to think I was tough before this happened. 

Looking back, that changed view of myself was down to damaging appointments with other medical professionals.  Ones who told me I wasn't trying; I was too focused on my pain (gee, please let me rip your muscles off your scapula and see how easy it is to think about anything else.  Seriously, please.); my questions were scorned, ridiculed, cut off; I was told so many things I knew to be untrue but felt I was not allowed to question them - and on the odd occasion I managed to summon up the courage to ask the question bouncing around my head, I was yet again dismissed; spoken to like an idiot - one medical professional even visibly rolled her eyes while answering one of my questions. (I would add, there were times my mum - herself a medical professional - and/ or my sister were in appointments with me; this made NO difference; they were treated exactly as I was.)

Looking back on that always makes me think of this quote from Matilda - a terrible concept to associate with any kind of 'care', but nonetheless, exactly how I felt:

I am delighted to say there was not a single moment I spent in Kentucky, or Pennsylvania, receiving treatment for my shoulder that brought any of these feelings to mind.  And I am currently very optimistic that I have left them entirely in the past.

Without revealing any of that, although clearly exhibiting my emotions, Dr K told me it didn't matter what anyone else had told me, I was TOUGH. (Apparently it's not an unusual concept among some doctors to think 'I don't know what this is; therefore my patient is crazy/ a hypochondriac/ attention seeking/ weak female who has no idea what pain is.' Apparently this was not the first time they had encountered this; nor did it surprise them.) 

Dr K told me that they didn't know why yet (I was only surgery number ~170), but that this was the worst injury he encountered in his orthopaedic clinic - in terms of severe pain, severe disability and lack of function.  It was a complete validation of everything for me.   A reassurance that I was not going crazy - and I don't even think I realised how much I needed that until I got it.

And then he said this whole process was going to be tough, and I would need to continue to be tough. That didn't seem like a particularly difficult instruction....

... I quite honestly couldn't imagine it being any worse than it was at that point in time.  Bring it on, I thought. I can do this. Just fix me.

Sometimes we are SO very lucky that we cannot see what lies ahead.  As the days, weeks and months followed on from there, "tough" became something else entirely.

And now, looking back over two years, I still remember ever single detail of that day; of that appointment; of how I felt. I remember the relief - the expectation that I would be 'fixed'; that I had my answer.

Of course, life is never really that simple (especially not mine, it seems) and this picture seems to say it better than I ever could:

And so the mystery solving continued, as my blog has detailed over the past two years.  But looking back on February 27th 2012 and my first meeting with Dr Kibler and with Aaron - despite EVERYTHING that has happened since then - I am still very grateful for that day; for the wonderful people they are and for the major part they played - and continue to play -  in my (ongoing) journey.

As I write this two years later, I wonder how I would have coped if I had known the long and winding path my recovery would take.  I cannot lie and say it has been easy - there is no part of it that has been easy: physically, emotionally, or psychologically.  Every single part of it has been a challenge, but I am still here, battling on, and determined to improve as much as I possibly can.  Right now, I don't know how much that is - nobody knows what to expect.  Perhaps that is the most difficult: the inability to make plans, to imagine what lies ahead because I genuinely don't know.  If nothing else, this experience has taught me to have patience (I'm not saying I've been good at it....); it has made me realise many people rush from one thing to the next that they must miss so many things in between.  Out of everything, I hope these are things that will stay with me.  I hope I will remember there is much more to life than rushing from one place to another - there is always something to appreciate; and there is always time to appreciate it.

Adopt the pace of nature: her secret is patience.

     ~ Ralph Waldo Emerson

Friday, February 14, 2014

My Soulmate

An entirely accidentally appropriate topic for today....

I think the person who created this is possibly my soulmate.  I am not alone.  I am not the only one who overthinks simple things!

However, I think I can win.  Paper is a metaphor. It represents the written (and spoken) word, which has resulted in old sayings such as "the pen is mightier than the sword" (scissors or rocks, if we're talking about violence) and "sticks and stones may break my bones, but words will never harm me" - not something we hold to be true anymore, but I'm pretty sure it also works with the metaphor.  'Paper' is words, writings, ideas - everything; it can even be used to represent diplomacy versus a violent war.

 So Mr Anti-paper, as much as I love your thought process, I think you didn't quite finish it, perhaps we are not soulmates after all! Paper all the way! 

Just to weigh in, you can't beat some genius thinking from Sheldon........:

Rock, paper, scissors, lizard, Spock
From The Big Bang Theory

Sheldon even uses 'paper' in a broader academic sense! 

And since it's after 6am..... I think this might be my favourite thing I've found on Pinterest EVER (so far.... so much more to discover....):

"There  is  a  drowsy  state,  between  sleeping  and  waking;  where  you  dream  more  in  five  minutes  with  your  eyes  half  open,  and  yourself  half  conscious  of  everything  that  is  passing  around  you,  than  you would  in  five  nights  with  your  eyes  fast  closed  and  your  senses  wrapt  in  perfect  unconsciousness."

    ~ Charles Dickens

Monday, February 10, 2014

Pain, Health and Existentialism

I am being referred to our local pain clinic.  I'm not exactly sure what it will entail, or what outcome I should expect, but one thing has been made clear.... I will NOT get an appointment without filling out their forms.... (Referral to a chronic pain clinic; question on form: do you have pain? Well, at least that one was easy to answer.)

However the question that has caused all kinds of strife inside my head tonight was this:

It seems simple enough, but really............ it is not.  Is is just not.

First, my brain screams - define health? Do they mean pain, my life, my quality of life, my health in what context... actually, HEALTH in what context?

I think the problem is perhaps the word 'imagine'It kind of works in my brain the way saying 'don't think of an elephant' does for everyone - it's impossible not to.  So when someone says 'imagine' my brain is very very good at just taking that instruction literally.  And of course, imagination knows no bounds....

Then.......... Answer everything about TODAY

What if I feel worse tomorrow; next week? By the time the appointment comes? Surely THAT would be a better time to answer. That's usually when they give you these forms.  Then at least you know you have put your 'right' answer on that day, and can explain it when asked.

My brain goes into overdrive...... all by itself.  I am really trying hard to think 'first number that pops into my head; first number that pops into my head'.......... but there is no number. 

Instead there is................................. Phenomenology; existentialism: is our only reality the moment in which we currently exist? (I curse my undergrad dissertation.)  If that is the case, then do the future and the past truly exist?  What about living in the moment? Zen? Pain being subjective?  How can I compare something subjective to the "worst I can imagine" or "the best I can imagine"

OK, reel it in....  So what is the worst imaginable state of health I think of?

  • Locked In Syndrome, I definitely think that could be the worst. Ignore the could.  Just start need for a whole list of alternatives.... So, that's at zero.

  • A coma with no awareness would technically be a worse state of health (I think - considering HEALTH, not LIFE), but there would be no awareness about what was happening, therefore where would that actually stand on this scale?  How many times have I said I wish someone could just put me in a coma, let me heal, let the pain go away, and I could wake up when it was all over. A lot.  I even dreamed this. It was a very disappointing dream to wake from.

  • Does that make my current state of health worse than being in a coma?  Is a coma preferable? (Yes, right now it holds some appeal.  For me - purely because I wouldn't be aware of my pain.) Does that mean if I would prefer to be in a coma, then I should consider my health to be almost as bad as I can imagine?

  • Except I can imagine much worse - terrible things happen all the time.  I'm not facing a terminal illness; I still have the ability to think and use my brain (not scoring high on the positive scale at this exact point in time).  The possibility of intractable pain for the rest of my life is still a horrifying possibility - a lifelong disability.... does that count as just thinking TODAY?  Or is that imagining the worst I can imagine.  I think the instructions are somewhat contradictory.

  • Reel it in again....nobody knows where the pain path is winding; I prefer to just maintain a positive outlook on that one (My nerves will heal; my nerves will heal.... they are not damaged beyond repair). I would just quite like to be in a coma until my nerves do heal; or they figure out a way to take my pain away (that doesn't involve suggestions of experimental treatment with bio-terrorism agents)…….. circle back to this idea.... not really making progress....

Again, I wonder out loud  (yes, I am talking to myself) how HEALTH is defined…. Is it simply the ability to live a 'normal' life? (Does anyone do that?)  Should I be thinking about the best life possible versus the worst possible - in that case, I consider myself very lucky; there are people all around the world dealing with unimaginable challenges simply to survive every day.  I have a sore shoulder and very limited use of my right arm.  It's not good, it hurts like hell; but it's not like I suffer life-threatening discrimination for my beliefs, or the fact I'm female; or am a refugee fleeing war in my country - does that count as quality of health?  I suppose that would more be LIFE, not HEALTH.  So where does HEALTH lie between LIFE and PAIN?

….. But, if I'm supposed to imagine MY best health possible compared with MY worst health possible - subjectively - and mark that on the chart, then I'm not very happy with my health just now - not at all happy, so should I put a really low number?

What do the numbers mean?  Using the word PAIN would have made this a bit easier...

I wonder if everyone finds these things this difficult……? (I doubt it.) I try so very hard to do the 'gut instinct' thing here - it's always what the questionnaires tell you to do.  But my 'gut instinct' is all these thoughts.  Really.  They just jump in my head all at once and the only reason it takes so much time is because I have to try to sort through them.

I wonder if I should just write an explanation instead of picking a number.  Picking a number is too hard.  I really do not believe humans should be broken down into numbers to be entered into a binary computing system.  We are too complex. (SEE!!?)

I want to pick a low number; I am NOT satisfied with my health right now at all…. It prevents any kind of normality… the surprise of 'waking up' and not knowing if today I will be attacked by the firey raging pain monster; exhausted because pain has prevented any kind of beneficial sleep; or feel (apprehensively) that maybe today I can finally at least LOOK at my to-do list without collapsing onto an ice pack.  But I hate seeming negative; I have coped with this entire thing (actually, that 'entire thing' would be my life....) by trying to focus on the positive. It goes against my attitude to pick a low number…. but I don't think that has done me any favours in the past -  unfortunately I think I am too good at slapping on some make-up, a cool hat (to hide the unwashed hair) and faking it.

Plus the girl on the phone laughed at me. (Yes, she actually did. It was a definite chuckle, to be specific.  It is impossible to give me an appointment without this terribly important form, apparently.)  If she needs this in front of her before she can assign me an appointment, then they must give it some degree of importance (hence my deliberating!).  Therefore I should probably pick a low number - be realistic instead of....... i don't know, what do I usually do?  I don't really lie........ my Mum once said she didn't think I was entirely honest about the severity of my pain.  I just assumed the various shoulder/ physio therapists knew, at that point - but here they don't.  I know they don't, so I really DO need to remove this innate desire to appear strong, and be honest about all this (possibly the best advice I've been given this week).  I DO need to be seen by someone at the pain clinic as soon as possible…. I DO have severe pain.  But I don't want them to think I'm a drama queen and a weak female, as seems to have been the general (clearly unjustified, as physical evidence later showed) opinion of other medical professionals.  Crap.  I have been emotionally scarred by too many judgmental medical professionals and it has rendered me incapable of actually picking a number on what is possibly an entirely arbitrary chart.  There's a cheery thought.

I wonder if I just declare I'm a phenomenologist and I can't answer this question on grounds of my philosophical beliefs, I could skip this one (hey, it works for religions).  I really don't see how rating ONE day on a scale, when realistically my appointment is going to be weeks (hopefully not more than weeks, but that possibility does exist) from now, is so important…. I could just write: I believe we live in the moment and exist purely in that reality and therefore cannot imagine anything other than what I feel now, making it impossible to compare this moment to anything else.

It's kind of my 'medically enforced zen' (i.e. don’t think about the future or you WILL begin to freak out and question the meaning of everything).

It's kind of true…. I've spent two years being told NOT to compare my pain today to, for example, how my pain was immediately after my surgery (which is definitely the WORST I can imagine, based on my own experiences).  Pain is subjective (so I am repeatedly told).  And right now, tonight, as I was filling in that form, I felt like someone had embedded a giant axe deep into my scapula that was cutting right through my shoulder blade area, all the muscles around it, and into the back of my ribs…. And somehow it was sending out little electric shocks from the axe-head in all directions.  Should I put something REALLY low?

That's not exactly what the instructions say…. I have experienced worse than this - should it go on my experience, rather than an imaginary best and worst?  I struggle to think where that would put me either.

I think back to the existentialist/ phenomenologist get-out clause……. I then consider just writing the link to the blog I wrote when I tried to meditate…. That seemed easy compared to this….

I look at the clock and realise it is nearly 2am; I am quite sure I have been having this conversation with myself for well over half an hour, longer maybe.  Perhaps I am crazy….

I decide my life is not 50% of what I would like it to be, nor is it closer to Locked In Syndrome than to 50%, and choose the number 40.

I imagine being asked why I chose to write 40.  I wonder if explaining it was 2am, I had been having existential arguments with myself for too long and I had to get to bed because I had physio the next day would be an acceptable answer for arbitrarily picking an arbitrary number on an arbitrary scale that someone I don't know, and who doesn't know me, will use to judge me. Or more likely, enter into a computer programme designed for that purpose.

I wonder if that is better than writing 'I'm an existential thinker.'  I really don't know.

And now, after I have written this all out, completed the formS (yes, that was just one) and sealed the envelope, I realise I should have written 42.  If asked to explain, that would have been simple.

"There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. 

There is another theory which states that this has already happened." 

     ~ Douglas Adams