t minus 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

Surgery follow up, Hogmanay memories & a kaleidoscope of butterflies

Disclaimer: First, I'm scrapping the 'blog a day' for January thing because it's clearly not been very successful!  I am honestly really exhausted after my surgery, I'm on strong pain medication and trying very hard to push my body through the necessary exercises as well.  As a result, I have developed a new, longed-for skill: falling asleep.  I just didn't really long for it to happen in the car (as a passenger), at physio, during Skype conversations, during any conversations........ My exhausted brain and body are not feeling particularly inspired right now, but I'm working on it!  Maybe February will bring with it some colourful inspiration...


SO................. surgery follow up - thank you to those who have sent emails/ messages/ said nice things, or asked how I am..............

................................so here are the gory details :-)

I saw my surgeon last Monday to get my stitches removed and for the general no oozing/ burning/ icky incision areas; no fever; no other weird stuff check.  Apart from the unexplained vomiting (& the surgery!) I seem fine, or more accurately, 'as expected'.


Stitches were removed from my three tiny little incisions which are healing nicely and look like they will barely leave a mark.  But believe me, these tiny little incisions are deceptive!  I'm using pure aloe vera gel, which is what I put on my first scar too - which is about fifteen(ish) times the size of these and looks great; so I think they'll pretty much disappear - top right photo shows how good it looks already.

Top:very odd but effective & protective 'sponge-ball' dressing; stitch on front incision next to same incision with stitch removed - barely going to leave a mark!

Middle: trying to get some perspective on front/ back incisions as 'release' was deep between these

Bottom: tiny back incisions with stitches (mainly there because taking photo out really messed up Picasa's auto-collage thing, so extra incision/ stitches photo beat the bloody gory ones!);
bruised inner elbow - guess they injected something here too!; hand - I don't really bruise that much but look how THICK the needle gauge was -  nurse told me she was "glad it went in first time, I couldn't see the vein" - I'm glad she told me that after it went in - not great when they say "big pinch and try to stay very still"!

Oh - and the permanent marker is the surgeon's initials.  You'd think creating one that maybe just evaporated after 12 hours would be more helpful than a permanent marker on an area too sore to scrub!

Back to my deceptive little cuts.  I knew it was never going to be like Dr K's surgery in Kentucky - open back surgery versus arthroscopy, definitely no contest as to which is preferable; but a lot can be pushed and pulled and stretched and cut through these neat little incisions.  I went into this surgery feeling different - in many ways - from the first one.  The first one, I thought it was going to fix me - oh the naivety!  I also went into that one thinking it could not possibly get any worse.  Nope.  Also, I was actually excited for my surgery in KY (seriously) - for all those reasons.  That wasn't totally naive.  And technically, it did work.  It just just that there was a whole lot more wrong than I knew at the time.


This time, I was not excited.  When the surgeon asked me how I was feeling prior to my surgery, I told him - and the anaesthetist and the anaesthetist's assistant, and the pre-op nurse - all of whom were wonderful - "to be honest, I'm a bit nervous about this one." Nobody knew what the outcome would be. But having everyone, including the anaesthetist and my surgeon taking time before the surgery to come and just chat for 5 minutes, to introduce themselves, explain what they'd be doing, ask if I had any concerns - I was not nervous about the level of care I would receive in any way at all.  Simple gestures, several minutes of their time.  Reassurance.  Kindness.  It's amazing the difference it makes and it was so very much appreciated.

I also, however, did not for one moment expect to wake up in excruciating pain!  This was those three wee incisions - not the open back, drilling-through-bone surgery I had in KY!  I hadn't even contemplated waking up in so much pain.  My first conscious thought was: this feels just like the last time - like I had been cut open, cut up, and sewn back together..... which technically did happen, I suppose.  They asked me to rate my pain on a scale of one to ten.  I've explained often enough on here why I hate that scale and really struggle with it.  Apparently my drugged-up, semi-anaesthetised self has the same existential problems as my undrugged brain.

"Just give me a number," the nurse said, "is it 5? 10? 50? 250........?" (At this point all I wanted was a sip of water. One sip. One ice chip.  Anything. I kept slipping in and out of consciousness but my mouth was SO dry from an anti-nausea patch - like talc had been squirted in my mouth. I kept pointing at the patch on my neck, trying to explain; my mouth was too try to say more than a few words.)  So I picked a number.  "250." I sobbed.  She said it first - and it  did hurt!   A LOT.  I asked again for water or ice, between sobs.  No water until I was conscious.  They gave me IV demerol........ sleep, wake, repeat........... they gave me IV fentanyl............. sleep, wake, repeat............ they gave me IV ketamine......  I kept falling asleep - probably only minutes were passing, it felt like forever and in between I kept trying to ask for ice, or water, and pointing at my neck.


Eventually I managed to open my eyes for long enough to be deemed conscious (imagine a kid pretending they have frog eyes - because this is what I was imagining as I tried to keep my eyes open.  I'm pretty sure this is what I was doing.).  I got ice.  I managed to talk properly.  The f&^%$#g scopolamine patch had fallen off my neck at some point.  I must have looked like a proper numpty just pointing at my neck (on the good side), not really saying anything! Although I wouldn't have choked on a SIP of water. With this figured out, they got me another patch.  And more ice chips.  And my parents.  It's funny, people worry so much about you (/someone) go in for surgery, and then they laugh at me (/someone) so much when I'm (/someone's) all doped up and waking up.  There must be some sort of relief-release thing going on there.

The nurse told me I hurt so much because I didn't have any local anaesthetic before the wounds were closed - I will stop claiming the lidocaine-catheter-into-the-wound 48-hour-pump-thing in KY did nothing.  I believe them now.  It was doing something!  

Where was it now?! Ouch!

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

The horrendous pain was bad for a few days, but ultimately it was nothing like KY. (Thank goodness!)  'We' -  my doctors spoke to each other, and to me, addressing my concerns - made sure that I really did have adequate pain relief (in tablet form).  At the time of my surgery in KY, nobody knew the extent of my nerve damage.  Keeping my pain under control with very strong doses of drugs should (hopefully) stop my nervous system going into overdrive. It wasn't quite 'normal' pre-surgery, but there has been a big improvement in the past 6+ months - surgery had the potential to set that off again and we are trying to take every precaution to avoid that.  So far............ fingers crossed.


At my follow-up appointment, Dr G told me he expected my surgical pain to take around 4-6 weeks to ease.  That was quite a relief (more for my mum I think) to know severe pain is still expected at this stage.  I do feel it is way better than after the last one; but I am very, very aware of how much the medication is helping with that - and very grateful to have something that is working.  Really working - I have just discovered that painkillers are actually meant to do that - kill pain.  Not take it down a notch or two; but really push it down; make it nearly disappear.  Dr G said maybe not take it away entirely, but maybe get it down to a '1' - if I had anything that could even get my pain consistently down to a '5' I would be delighted.   I have never had that before - the kind of pain relief I had after this surgery. I can't believe I genuinely didn't know that.  (I am now looking for a pain doctor.)  And right now, all the sleep is awesome!  Not ideal, or desirable, as a long-term solution, but definitely helpful at the moment.  They say you heal when you sleep...... and I have a lot of healing to do, and rather a lot of sleep to catch up on too!

I've used this before, but I love it.
Also, this fact is hereditary - it is passed down on the maternal side ;-)

Dr G explained that he cut away about 2 to 3 inches of scarred down glenohumeral ligament "deep" in my shoulder.  To be honest, I need to read a bit more to really understand it, but basically the scarred down ligaments have been preventing my arm from being able to reach above my head (or be pushed, pulled, stretched, forced - pick the torture).  Under anaesthetic, my left (good) side movements were measured and then my right side compared to it.  Apparently it's quite unusual (surprise surprise) to have close to normal internal/ external rotation (& some other specifics) and just not be able to do one movement.  My physios (and I have too!) have spent a lot of time working manually which has brought improvement - at one point a physical therapist in KY told me I had "the worst external rotation [she'd] ever seen".  Why some of the manual therapy worked, but not the overhead, I don't know.

From: http://en.wikipedia.org/wiki/Glenohumeral_ligaments
Marked: CAPSULAR LIGAMENT

Honestly, my guess would be I damaged that area initially - it fits with my initial pain location (pain in that area has been a constant), and my mechanism of injury, the way I fell etc.  The other stuff got stiffer as time passed.  But who knows, really.  Now, the big question is whether the surgical release of this tissue will be enough to enable manual therapy, with passive movement, to make enough of a difference; or if there is a chance I have more scarring in other areas of my side/ribs/ lateral scapula area that may need to be looked at somehow.  Only time will tell.


All in all, Dr G has done exactly what he said he could do, and he has done it - so far, it seems - in a way that feels positive, helpful, and totally worth the surgery.  I am just keeping my fingers crossed that the healing continues and I survive the required physical therapy.  At my appointment he did say that one of the difficult things is being asked to do therapy; to keep it moving; to prevent it scarring again - all while there is pain and healing going on.  That's nothing new, it really feels like I've been doing that since June 2011......... I can't believe it's been so long.  My body is agreeing with this being a major challenge though.  It completely freaked out at physio on Monday (the 'stick' and I really do not get on - it has never liked me; nor I it); we opted for a more gentle session on Wednesday to calm things down; then Friday we went looking for that elusive 'line' everyone talks about,the one I've been searching for for close to three years.  It seemed better today, but it was really a trick. My body is fickle!!  It just waited a few hours, I had a nap after I got home (ok, I fell asleep right in the middle of a skype call to my sister.... sorry Jill!) and then later,  my muscles freaked out again, and spasmed, causing drenching sweats as a kaleidoscope of butterflies* fluttered inside me, little fasciculations fluttering within my muscles - an old familiar feeling, unfortunately. Excellent. The line continues to elude me.


*I was going to say a swarm of bees buzzed inside me, but I use the butterfly analogy more - it's more accurate; so I Googled a collection of butterflies and learned the correct term is a kaleidoscope of butterflies - how cool! I am going to use that any chance I get.  And I don't imagine there will be that many opportunities, so there it is. I think the colours should be compulsory too!

Live Colorfully! (Love Kate Spade - I could do this resolution!)

Back to Hogmanay (as New Year's Eve is known in Scotland - and it's such a big party that both January 1st and 2nd are public holidays!) and my post-surgery evening..........

I did manage to get upstairs (with help) and into bed (ditto) - after KY I couldn't climb stairs for 2 weeks, nor could I lie flat.  This time I didn't need to have my arm immobilised, although I have a sling for when I really need it - especially in busy places, it serves as a warning sign as much as a support (maybe I'll get some fabric paint..... make it colourful!)  So although I was sore, objectively I did know it wasn't as bad right from the beginning.  Although I was totally out of it from the "entire pharmacy" of IV meds the nurse told me I'd had (her words).


Mum came upstairs regularly, to check on me - I was mostly sleeping.  At one point she asked me if I thought I'd be awake at midnight (for the new year - one I won't forget!) and did I want her and Dad to come upstairs 'for the bells' (another Scottish reference) rather than leave me alone.  I looked right at her, eyes open, and said, "have you still not finished putting together all of these prizes for this thing for Jill & Fraser?" (my sister & brother-in-law - who were back home in Scotland).  The look on my Mum's face was priceless.  I really don't think I've seen her speechless before!  Despite being - clearly - not quite with it, I did manage to respond first,"oh, I must have still been dreaming."  (Absolutely no recollection of my dream) - to be honest, I think it's actually funnier to me because I remember it....... this complete expression of pure confusion on her face.  I also remember her coming in some other time, asking me what I was watching - my laptop was open -  "I'm watching my screensaver." (In my defence, my screensaver is mainly photos and quotes saved from Pinterest - sometimes I just let it play like my personal little inspirational slideshow while I'm doing other stuff anyway, although I'm not usually 'watching' it.)  She thought it was hilarious.

For entertainment value, I did amuse them :-)

They got me these:

I really don't know where I'd be without them.

"Life is what happens to you while 

you're busy making other plans." 

     ~   John Lennon  ~

Looking Back

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

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.  

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

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):

from: http://www.ebnurse.org/index.php?id=78

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:

http://www.pinterest.com/gmun22/books-words-reading/

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....

http://www.pinterest.com/gmun22/inspiration-for-recovery/

... 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.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

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.

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

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:

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

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.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

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.

http://www.pinterest.com/gmun22/scapular-muscle-reattachment-surgery/

Adopt the pace of nature: her secret is patience.

     ~ Ralph Waldo Emerson

Butterfly dreams

This wasn't even planned.... today I put a tea bag into my favourite mug and it was like insta-blog:

I actually feel I could leave it at that - one picture worth a thousand words, but most people who know me will know I am more of a 'why use one word when ten will do' kind of person.

I first learned of the quote on the mug a few years ago, after my diagnosis of Lyme disease -  actually almost 6 years ago now.  Not long after that, my Dad's job took us from Florida to Pennsylvania where everyone knows what Lyme is, I found the best doctor in the world (I stand by that claim - in all possible ways)  and began my treatment.  The idea of a caterpillar thinking its life is over and then becoming a butterfly fit perfectly.  Perhaps things didn't exactly follow the expected path from there, but it's still an optimistic quote worth holding onto - something beautiful can come out of even the lowest points in life - but we have to work for them (just like the caterpillar builds its cocoon!).

Having dream on my teabag today seemed perfectly fitting.  It goes with the aspirations of finally becoming a butterfly (just to draw out the metaphor as much as I possibly can), but it reminds me that it's the most important thing to do.  Dreams, hope - it's what keeps people going.

I've had several doctors and therapists tell me that my shoulder will never be normal again. (Some more bluntly than others.)  I appreciate their honesty - they genuinely don't know, because they've never dealt with this combination before, so I would much rather they are honest than pretend they know all the answers.  (The ones who did that caused me far more harm, way back in the early stages.) Nobody knows how much use I'll get back in my right shoulder/arm/hand; or how much (or if) my pain will improve and how long that could take.  They have different guesses, but the conversations usually go something like this:

Dr: I'm sure if you get back 70% function you can live a normal life and you'll be happy with that
Me: But if I can work hard and get to 70%, surely I can just work hard for longer and get something better....?
Dr: Well.........
Me: *staring expectantly*
Dr: Sometimes it happens...... *trails off*

(Just for some perspective: my last evaluation, I was at 20% function - it took me 12 months to go from 15% to 20%.  I should have that evaluation done again this month. I think I've improved, but the last couple of times I've answered the questions, I feel better for the first 4 questions - yes, I can now turn on a tap 'with difficulty' and put on sunglasses 'with difficulty' instead of not at all... YES!!, I think, finally I'm not just circling 'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'......... then it moves on 'can you sleep on your affected side?'; 'can you reach up to the middle of your back/ undo your bra with your affected arm?'; 'can you reach a shelf at shoulder height with a straight arm?'; ' can you put a gallon of milk on a shelf at shoulder height with a straight arm?'; 'can you play tennis?' etc. etc. and it's back to  'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'............ I have to have improved a LITTLE....)

I learned in November 2012, after it took me 9 months to re-learn how to shrug my shoulder that I had done something none of my doctors knew whether to expect or not.  They didn't know if the neuromuscular connections were going to re-form after such a long period of detachment, and all the atrophy that goes with that.  But I worked damn hard on those shoulder shrugs, and as far as I am concerned, I can work damn hard on everything else too.... when I'm allowed...

I don't have unrealistic expectations (well..... maybe saying I know they're (slightly) unrealistic would be more accurate.... I do have expectations, I know they might not happen); I know if I do achieve certain things, it will be against the odds, and it will take a lot of hard work - and it won't happen any time soon.   I know that I can't even do the hard work until the nerves heal, which is estimated at 2(ish) years.  But it doesn't mean I will stop dreaming and stop trying and stop hoping as I do the tiny exercises I can do just now - which I think I am getting better at....

Definitely improving on my first attempts.... several weeks ago, my Scottish physio tried to get me to do a new exercise.  He demonstrated - stood in front of my, barely hunched over and swung his arms in a rhythm, into the middle, out to the side, crossing them in the middle, across the body. Ok, easy.  He went behind me to watch my scapular movement as I did the exercise.  I tried reeeeeeeeeeeeeeeeeeeeeeeaaaallllllllllyyyy hard to make my right arm swing.  Nothing. (This still surprises me.)  He walked in front of me again, showed me the exercise again. Ok, yup, I know.  Walked around me again to watch my scapulae. Go.  I tried.  Nothing.  The left one was just swinging kind of oddly, as my brain attempted to make the right one mimic it, but I obviously hadn't tried that since my surgery. 'New' movement: doesn't work. My brain couldn't make my arm do the movement - this is the weirdest feeling ever, I really struggle to describe it.  My physio, a powerful motivator and someone who will work you with an appropriate mix of compassion + professional coach (/ slave driver in my athletic past - he is way too nice to me these days!) stood in front of me again.  "What exactly is the problem here?" he asked.  I showed him my pitiful attempt to swing my arm (which incidentally was also pretty sore and kind of felt like my hanging, disconnected arm might just drop to the ground out of its socket if my skin wasn't there... although my pride was hurting more I think).  I don't think he knew whether to laugh or feel sorry for me. (He chuckled, halfheartedly - I think if there's such a thing as a sympathetic chuckle, that's what I got.)

He stood in front of me told me to stand up straight and mirror him.  Eventually, my arm got a bit of rhythm - albeit a little awkward.   Now hunch slightly, is that more painful? Yes, but I'm ok (as the room filled with white sparkles - I can ignore them, it's the black sparkles that mean STOP... generally physios and doctors disagree, but it works for me - I have to move SOMETHING).  Again, he stood in front of me and I watched him as I swung my arms, still awkwardly, but at least moving this time.  He went behind me and looked at my scapula. "Useless," he said, "it's not moving."

Awesome.

And back to the quote, with a final 'new' exercise, also a few weeks ago. Standing very close to, and facing the door with my palms against the door at a comfortable height (around level with my chest), shoulder width apart, he told me to move up and down in tiny movements - a couple of centimetres, no more.  He stood behind me, watching my scapulae. Try it with wider arms. Same.  Smaller movements. Arms back closer together. Wider again. Tiny movements. Make them smaller.  Arms together.  Arms wider.... "What exactly are you thinking about right now?" he asked me. "I'm imagining I'm a butterfly, my left scapula is a wing and my right one's trying to do the same thing," I spat out, frustrated and exasperated. "Good," he said, "keep thinking like that."

Backtrack: September, a busy month...

I'm really not entirely sure how it's November already. I think possibly because I slept a lot of October away - and now with the dark nights, frosty days and Scottish winter looming, I am absolutely wishing I could hibernate for the next few months!

As planned, (eventually) I made it back to Scotland for the beginning of September.  September was just a crazy-busy month - planning and hosting my sister's surprise hen weekend (the weekend after I got back), my sister's wedding, lots of catching up with friends and family, including some who had travelled internationally to be at the wedding........ AND then moving house at the end of the month - the day before my Mum's birthday this year (and despite my best intentions and attempts to not stress my parents out - especially after planning and hosting a wedding! -  with another house move, and my (slightly idiotic/ delusional) insistence I would to do it myself after they left, it was pretty apparent that wasn't going to work, so I was extremely grateful for ALL their help).

I think that could be considered a busy, stressful, tiring month for anyone, so I definitely crash-landed back home. I'll leave the health talk for another post.

Overall, September was a month full of celebrations and they do say a picture is worth a thousand words... So, to save about 22,000 words, here are 22 photos!

Hen Party

Jill's surprise 'Hollywood Hen Party" at the wonderful Crieff Hydro Hotel

*          *          *          *          *

Wedding

The Munro-Milligan wedding, at The Vu (near Edinburgh)

In a very kind gesture by my sister and her new husband, in lieu of favours at their wedding, they chose to make a donation to a UK Lyme Disease charity - personally I think it's a wonderful idea, generally, to consider a donation to a charity for that purpose, and it was very touching that they chose to donate to a Lyme charity because of my journey. Thanks :-)

“Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”

       ~  Buddha

Chronic pain: golf balls, marbles, pebbles & sand

I saw a quote on  website recently that really made me think. It said:

"my life is full of pain"

I stared at it for a while, even kept the tab open for several days, going back to it every now and then and wondering what I really thought about it.

I thought a lot, so bear with me...

It made me think about this story that, throughout the cyberyears, has appeared in my inbox many times and (more recently) has popped up on various types of social media. True story, or urban myth, I like it.  It goes something like this:

A professor is giving a lecture to a large group of students.  He starts the lecture by holding up an empty jar which he then fills will golf balls.  He asks the students if the jar is full; they reply yes, it is full.  Then he opens another box on his desk with marbles inside.  He pours some marbles into the jar, watching them fill the gaps between the golf balls.  Again, he asks if the jar is full. (I'm hopeful here that being university students, they would see where this is going and not answer yes here, so in my version they're going to just watch expectantly as he produces another box.)  It contains tiny pebbles (I personally imagine these to be like ones used in a fish tank) which he pours into the jar and they trickle into the gaps between the golf balls and the marbles. At this point, the jar appears to be full, and there are no more boxes on the table.  He asks the students again: is the jar full? He then reaches into his desk drawer and pulls out a bag of sand. He slowly pours the bag of sand into the jar, watching the tiny grains fill every crack and crevice between the stones, marbles, and golf balls.  Now is the jar full?  At this point, the students agree: yes, the jar is full.  The professor, however, has one last trick.  He produces a bottle of beer from the drawer, opens it and pours it into the jar where the liquid is soaked up by the sand.

The analogy (in the version I have seen) is that the jar represents life.  The golf balls are the most important things in your life - friends, family, pets, health, people you care about and have a responsibility to.  The marbles represent other responsibilities in your life such as work, studying, volunteering or other important commitments.  The pebbles represent the smaller essentials - a social life, relaxation, hobbies - whatever is required for some 'me' time to keep you sane(!).  The sand is everything else - errands, tasks, bills, worries, stress - somehow, these things will fit in somewhere.  In the version I read, at the end one student asks about the beer.  The professor replies that no matter how busy your life is, there is always time for a beer with a friend.

I've always liked the analogy.  Strangely, being ill for such a long time, and being away from a 'normal' reality during a time when most people are just throwing themselves into it (i.e. our twenties), has given me time to really reflect on the important things in life.  So breaking it down visually,  I think, is very effective at making people really stop and think about what is important, and realise that you can alter your perspective, and your priorities, depending on what way you look at your life.

However, the quote at the top of this post made me think about this analogy differently.  I think it can also be used to explain chronic pain (or, by extension, any chronic medical condition).

Pain is a horrible thing.  Everyone knows that.  But most pain is transient - even the pain of a broken bone, or childbirth, is temporary, however painful it may be at the time; the searing agony of stubbing your toe is over in seconds; the sting of a papercut always feels like the worst thing ever when it happens (or when you get lemon juice or alcoholic hand sanitizer in it later!), but again, after a day or so, it's healed and forgotten about.  Emotional pain, depression, or severe anxiety, are harder to make comparisons with, as everyone has very different personal responses to different situations, or to internal emotional pain (although physical pain is highly subjective too); but I think the analogy has relevance here as well.

Chronic pain - physical or emotional (and/or both, as they can be inextricably linked) - is impossible to truly understand without experiencing it.  It is wearing, exhausting, draining, energy-sapping, emotionally challenging.  It can be mind-freezing, gut-wrenching, pillow-biting; for me, it has rendered me speechless, breathless, sobbing, nauseated, dizzy, light headed, faint, crying, moaning, whimpering... at its very worst; and at all times, a dull, constant, heavy ache - like another, heavier, body, attached like a magnetic imaginary twin, permanently pulling you down.

At my last specialist physio appointment, I decided it would be helpful to 'draw my pain', to map it out and visualise it - I thought it would be simpler than spending an eternity trying to describe all the facets of it.  Here are my drawings:

Left: Right scapula pain: top drawing - looking at the scapula from the back; bottom drawing - looking at the scapula from the front (as if you can see through the chest); Right: drawing showing pain in spine and ribs - as if looking from the back. (The colours correspond with different types of pain, explained in the colour-coded descriptions.)

To be honest, I'm not entirely sure what my physio made of it.  I kind of got the distinct impression most of his adult patients don't hand him pictures they've drawn and coloured especially for him...  He studied it silently for several minutes (as I quietly wondered if I'd crossed a line and might require psychiatric evaluation) and came to the perfect conclusion: "It's a mess.  Your shoulder's still screaming at you and everything hurts." In a nutshell.  But he kept my drawings.

So, back to the quote: "my life is full of pain".  Most of the time right now, I feel like my pain dominates.  No matter what I do, however much I (usually) enjoy it, or more typically right now, force myself to do it because I do (I WILL make myself) enjoy it - the pain is still there.  It can be ferocious, overwhelming, sometimes it hits me like a freight train - one minute I can be making lunch, the next minute I'm sitting on the kitchen floor, watching the black stars sparkle above me, sweating, and wondering exactly how I got down here (again).  The hardest thing for me is not knowing when that freight train is coming - sometimes it can be a tiny movement that I'm sure I did a dozen times the previous day; others it's fatigue - when I just push my(stubborn)self a little bit too hard; or try to do a little bit too much in a day.

And, yes, it's frustrating, it drives me crazy, I wish it would just simply disappear; sometimes I cry with pain - still; other times, with sheer frustration. But despite all that - and I've described it as much as possible to really make this point - despite all that, I would NEVER describe my life as being filled with pain.

Back to the analogy... Some days, the pain is in the golf balls - these are the worst days, where the pain is big, angry, dominating, and getting in the way of everything else; but on those days I still have space for some marbles and pebbles - emails from friends, that always cheer me up, a good TV show streamed online, some chocolate, and perhaps rather unhealthily (but unfortunately necessary) my concoction of pain medications and topical pain creams and gels... and my life-saving ice machine.  The sand - as in the life analogy, the annoying things are not priorities on those days, bills, emails, whatever I have to do, it can always wait until tomorrow.

(This should always go without saying, but my Mum is always a golf ball - the most important thing to me on bad days and good days, and a constant presence and support throughout.)

On other days, the pain is the sand - allowing me to enjoy the big things a bit more, but - rather like when you go to the beach - the sand still finds its way into everything!  But, if you go to the beach, you're going to get sandy... it doesn't stop you going.  Right now, everything I do increases my pain and I do have to judge how much I can tolerate and what is 'worth it' - and finding out where that line is has been close to impossible; it seems to change every day - however, it's is still not going to stop me trying.

So, for anyone who thinks their life is too full of pain to make space for anything else, remember the glass jar with the (almost) infinite capacity.  Life is what we make it, and no-one ever said it was easy.

And of course, there's always space for a cup of herbal tea with a friend... even if it's on skype... with me curled up in bed attached to my ice machine....

Be careful when you fight the monsters, lest you become one.

  ~  Friedrich Nietzsche

Chaos

Tomorrow marks one year since my surgery.  When I look back over my blog, and my diary, to this time last year I was filled with such optimism - a sense of excitement that, finally, I was going to be 'fixed'.

It's really hard for me to compare then and now.  If everything had been the same, and I had still to make the same decisions, I know I made the right decisions and would make them again - without the surgery, I would never have regained the use of my right arm.  But honestly, I thought I'd be handstanding by now!

My case has been unique, at least... I suppose... my doctors tell me it is "fascinating" and "interesting" for them, and that they are learning from it so at least I feel it will help someone else with a complex case in the future.

And I am getting there, it was probably better that I did not know how hard it would be, how long it would take, or, worst of all, how much pain I would continue to have now - one year on.  But nobody knew how my body was going to respond.  And nobody knows how much of a part Lyme plays in recovery from surgery either - there is some speculation, but there is no solid scientific evidence that gives any proven information on possible effects.  It is easy to feel low, to feel I want to make faster progress, but I always remind myself that I would have made exactly the same decisions if I had to do it over.  And at least that makes me realise that even although I wish I was more in control of it all; I wish I could speed up the healing; I am in the best possible place I can be in, given the circumstances I had to deal with.  

At physio on Monday, I was complaining of increased headaches and neck pain and after a thorough assessment, Angelo said, "your neck's in the wrong place".  Great... another super-weird thing I've been told this year. He told me I am trying to do too much again -  a small improvement is exciting, but then trying to push it too much can have a negative effect.  Sometimes it seems never-ending, but all I can do is keep at it, work hard (as appropriately as I am allowed) and still give my body time to heal... which, it still needs lots of, apparently!  One of the hardest things is accepting that trying to do everything for myself is not the best thing for my body and accepting help with day-to-day things (as simple as filling or pouring a heavy kettle, even left-handed) is something I really need to do.  It is just so difficult to feel like I have to say "I can't do this" a hundred times a day.  I have always been determined and independent and I hate the feeling of failure and inadequacy that produces.  At the same time, I then have to go back to the advice I was given last year about thinking of resting as "enabling healing" and that (sometimes) helps.... a bit...

I saw this on Pintrest, and given my life over the past year has been chaos (physically, emotionally, actually I think in every way imaginable!) I am therefore hopeful that this magic little bit of wisdom from cyberspace is correct and great changes will come from this.

Gotta keep some hope...........

It also reminded me of one of my very very favourite quotes, which I used exactly a year ago too:

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

   ~   Friedrich Nietzsche